Yesterday, I saw a woman at the grocery store. She was in a wheelchair and was struggling to manoeuvre around and between other shoppers but, with a smile on her face, she got on with her shopping. Every now and then, she would ask for assistance from a fellow shopper when something was out of reach. I observed her matter-of-fact manner and noticed that even though she was a little slower and less efficient than everyone else, she was getting it done all the same.
As I watched, another woman boldly approached her and began to ask her a whole lot of questions about her wheelchair. She asked why she was in the wheelchair, for starters. She just couldn’t seem to comprehend that the wheelchair-bound woman was unable to walk. She seemed, in fact, rather irritated that this bulky wheelchair was taking up space in the aisle and interrupting the other shoppers.
She then asked, bluntly, what it felt like to be unable to get up and walk. The woman in the wheelchair calmly and patiently explained that she had always been in a wheelchair and that she did the best she could to manage and that she felt she was doing just fine, thankyouverymuch. With that, the other woman sighed dramatically and said, “I could never live like that. No way could I ever be in a wheelchair…”
Of course, the woman in the wheelchair was taken aback and didn’t reply, so shocked was she at this blatantly insensitive statement. Before she could catch her breath or formulate a response, the other woman went on to say, “How does your husband cope with you being in a wheelchair? It must be so hard for him to be married to you!”
Okay, I lied. I’m sorry. That didn’t happen at all.
There was no woman in a wheelchair.
There was just me. With my invisible ADHD.
The conversation was the same, though. Someone asked me to explain what ADHD feels like and after I explained my memory lapses, my time-distortion issues, my struggles with organisational anything, she replied, “Oh, I could never live like that…” and shook her head.
As if my ADHD is a choice.
As if I have the power to just ‘grow up get over’ all the symptoms with a little elbow grease and discipline.
As though the physical make-up of my brain (the fact that my frontal lobe is smaller than a neurotypical one and is also under-stimulated) is somehow a character flaw.
She then continued, “How does your husband cope with your ADHD? It must be so hard for him to be married to you!”
I didn’t answer her because, frankly, I was stunned speechless.
After crying onto my husband’s shoulder for the better part of an evening at the realisation that this may well be how the world at large views me and receiving nothing but love and the assurance from him in return, I now want to say here what I wish I had the wherewithal to say that day.
Let me be clear about this: I don’t choose to be disorganised, unfocused and forgetful. Yes, it’s hard to be married to me. Extremely.
Know what’s harder? Being me.
Having ADHD means suddenly realising, with gut-wrenching panic, that I’ve missed a lunch date with a friend because four hours went by and my brain only registered a half an hour. It means that the three alarms I set to alert me that time was passing went unheard because I was hyper focused on the task at hand. It means being frustrated that yet another organisational system failed to work.
It means being asked if I remembered to fetch the dry cleaning/pay the bills/go to an appointment and my stomach clenching because not only did I forget but I have no recollection at all of the entire conversation where I was asked because it fell into a memory hole. It means often feeling like I am losing my mind.
It means setting alarms, making notes and writing lists and still forgetting to do something I promised. It means sinking into a Depression and wanting to never speak to anyone again for fear that I will disappoint them.
It means waking up with fear burning in the pit of my stomach that I might let someone down today. It means profound guilt as I realise, at the end of the day, that despite my massive efforts, I still did let someone down.
It means constantly losing track of conversations mid-way and filling in blanks. It means lying awake all night with insomnia borne from worried thoughts that swirl aimlessly around my head, demanding attention. It means constant self-flagellation. It means developing a thick skin because people regularly lose patience with me and cross me off their ‘friends’ list.
Do you know what else it means?
It also means I’ve had a lifetime of practice in seeing the silver lining around dark clouds. It means I have outstanding problem-solving skills and the ability to think on my feet. It means I’ll find any reason to smile and I’ll grab it energetically with both hands.It means that if you’re my friend and you accept me, warts and all, I’ll take a bullet for you. Without so much as a passing thought. It means that, as horrendous as I am at spreadsheets and calendars, I’m fabulous at painting and writing and free-thinking.It means I’m spontaneous. It means I’m generous.It means I am willing to fall down a hundred times and still get up and try again.It means I have an infinite capacity for love and forgiveness. Because I know only too well what it’s like to be shut out, judged and found lacking.
I would like nothing more than to have the magical powers to ‘snap out of it’. My life would be exponentially easier, I can assure you.
That’s not going to happen.
My ADHD may not be physically visible to you, but it is a physical difference in my brain. It is not going to go away. No matter how irritated you are as you tell me to try harder, to write a list or to set an alarm.
It isn’t a choice.
If you wouldn’t tell someone in a wheelchair to just try harder to walk, to use discipline and willpower because her ‘paralysis’ is not really a ‘thing’, why do you think it’s it okay to say these things to me?
My friend, it’s not okay.
Invisible illnesses are far from invisible from those who live with them. Just because you can’t see ADHD, Depression, Anxiety, Chronic Fatigue Syndrome, Fibromyalgia, Chronic Myofascial Pain or Colitis (just to name a few invisible conditions) doesn’t mean they are imagined. Please show compassion, love and forgiveness for the inconvenience they cause you. I can assure you, the carriers of these conditions are not having a party at your expense.
I know you remember everything with ease and are incredibly organised. For this, I applaud you loudly. Really. I can’t even fathom those superhuman skills. I, on the other hand don’t remember what’s in my diary from day to day, what’s on my to-do list or where my car keys are hiding (I swear, I put them over there!) and I know this is frustrating for you. I’m sorry for that, truly I am.
On the bright side, I also never remember to put my bitch pants on.
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People can be so mean I’m sorry. I am in a wheelchair and have gotten very similar comments myself , they suck. My mom has adult ADHD and while I have never heard anybody say such hurtful things to her I see her struggle every day. You are not alone, just because ADHD is invisible doesn’t mean everyone is blind.
Thank you for this comment, my friend. Mostly, people card lovely. It’s just that the sucky ones really stick out! Thanks for the beautiful comment.
Very familiar with this. I have ADD, depression, and digestive problems. I’ve heard it all. I can really identify wanting to say, I’m so sorry this is so hard for you to find one thing I can eat, once, I have to deal with my digestive problems for every meal that I eat every day and your complaining makes it 100x worse. I’m sorry it’s inconvenienced you and made you think an extra 15 minutes. Cuz I obviously choose to have pain, discomfort, nausea, and other symptoms you ask me to describe at the table without thinking that it might be embarrassing to me or disgusting to you. Not to mention depression, obviously, I haven’t thought of just picking myself and feeling better automatically, thanks for that genius advice! Again, sorry that the idea of my depression bothers you, try actually living it for the past 30 years!
That’s awful! It makes the recent encounter I had with a “special person” seem less in comparison. You see, my son has what they classify as High-functioning Autism Disorder.
I was shopping with my “Sis”(best friend for too many years) for the first time in forever, having a quiet conversation(as in, we were speaking softly in a public place, and the only way anyone could have heard was to bee too darn close–and she was)…and I got this gem that had several of these lovely bits tossed in: She asked me bold faced if he “only” had Autism, or if he instead had Aspergers, and how many treatments or special diets until it goes away–she of course, was asking because “a friend” has a child with it, and she wanted to reassure her that it goes away quickly. It was surreal, and part of it reminded me of this clip: http://www.youtube.com/watch?v=5fTBM_3sdwE I was a bit too upset to be rational. My friend, however…
My friend, who I can cheerfully describe as “always wearing her bitch pants”, got in this woman’s face about nosing in on a private conversation(and getting close enough to smell the perfume in my locket is too close), and that she needed to go talk to her Mom and re-learn what “personal space” is, and that just because you cannot see the difference an Autistic, Bi-Polar, ADD/ADHD, Deaf, Dyslexic, etc. person has from a normal person, does NOT mean there isn’t one, and they DON’T just go away. We live with them for life, and being a nosy bitch acting like there is no way you(or your child) can have a disability because you look so “Normal” isn’t helping.
We don’t choose these things, true, but what we choose to do with the hand we’re dealt with is how we are defined, despite the ignorant folks that don’t bother to see with more than their eyes.
You write the most amazing, thought-provoking posts here and on BonBonBreak about every topic that means something to almost everyone, so that makes you great.
We all love you for the courage you have for writing about it(as it cannot be easy to deal with), and sharing in your triumphs, as well as the down days.
Thank you so much for the glimpses you give into your world.
I cannot believe your story. People can be so mean. But, if this blogging journey has taught me anything, it’s that there is an overwhelming abundance of wonderful people in this world, too. Thank you so much for this comment. It meant a lot to me.
I love everything you write about…you are a strong, beautiful, smart woman. I admire you for all that you are.
Thank you so much, Stephanie. Much appreciated.
So true. Thanks for a very well written piece that describes what a lot of people go through. I myself am bipolar w ADD and it truly is a silent struggle a lot of the time.
Thank you for taking the time to comment and join the voice that shouts out to other ‘invisibles’ that we are not alone, nor are we weird or less than.
I totally love your blog. I suffer from a couple of invisible illnesses and I too have lost friends because of it. I’m just too hard to handle it would seem. As well as the fact that because people think I don’t look sick then I must just be attention seeking or making it up. I wish! If that were the case I’d stop it all in a heartbeat! Thank you for posting this, it adds fuel to my inspiration for my blog too! Have a great day x
Attention seeking… oh, you gotta love that one. Glad You’re inspired! I’d love to read your blog.
Feel free to have a read
how did you manage to get medicated,i live in australia and I’m pretty sure my daughter and myself have add or adhd and the doctor refuses to medicate and has told my daughter that if she wants help that she has to pay to see another doctor about it,can you help me,thanks kim
You need your doctor to refer you to a pediatrician (but before you go, it’s best to get your child tested by an educational psychologist to see if she in fact has ADHD and also get the school to write a report). For yourself, get a referral for a psych (there are a few who specialise in adult ADHD) and go from there. Hope that was helpful!
Oh my goodness. You have actually given me hope.
I suffer from an unfortunate large number of illnesses. Depression, Menieres disease, recurring glandular fever and I had a heart condition that has not returned but I pray that it stays far away.
I tend to forget I have these things, like I forget what my boyfriend told me this morning. I forget to send a red balloon with to school. I forget peoples birthdays or to leave the shower running for my boyfriend after I have showered. I forget to brush my child’s teeth on a daily basis. I forget to take pills that I need to take that are supposed to help me with my forgetfulness.
I didn’t know that I wasn’t the only one.
Thank you for being so honest, you have helped with my guilt in ways you will never know.
The guilt sucks because, really, we are doing MORE than our best to just function on the ‘normal’ scale. Please know you are not alone and that I also forget to take my forgetfulness pills!
I really liked this post. May I link to it in my blog?
If be honoured! Thank you for the compliment. Please tweet me @theycallmemummy when you post it, so I can direct traffic to you.
You are special, please know that. MJ xxx
Thank you for the hug this morning <3
I am constantly amazed at the sheer rudeness of people, and the total lack of empathy – as if their world view is the only one there is and the only one that could possibly mean anything. I always look on everyone as being different. We have no idea what is going on for someone else inside their mind or life. I look normal, and I sometimes suffer from depression. I also struggle with relationships at times to the extent that I can relate to some people on the autistic spectrum. I have friends who have / have had a number of invisible conditions. They tire easily / get stressed over small things / close themselves in / get SAD / etc. They also post funny pictures / give great hugs / bemuse me with their intellect / etc. And they are my friends first and foremost.
I am sorry there are such idiots in the world.
And thank you for posting what it is like for you having ADHD. As I read it, I thought of a lad in our Sunday School with ADHD and there are a number of parallels so it made me go, “Ohhh, so *that* is what is going on for him. That explains a lot.”
I’m not by any means perfect (and I am tired now, so am probably not saying in words what my heart is feeling on the inside) but I do wish that more people saw the inside of others and not whacked around the outside.
As someone who has struggled with ADD all her life I still can’t believe how insensitive people, adult, grown, supposedly reasoning people can be. I’ve been called lazy, stupid, just making excuses, brain-like-a-sieve, mocked, etc. I’ve had pharmacists and acquaintances treat me like I must be a drug addict because I take a relatively small amount of medication for my ADD (which, of course, I forget to take some days). I’ve had people assume that this medication gives me an unfair, extra advantage, when really, all it’s doing is helping me get a little bit closer to what a normal mind must feel like. It gets old, really old after awhile.
But this is how I handle things these days when I get a rude and inconsiderate remark. I ask that person if they would say that to someone with Diabetes. “Oh, if you just tried a little harder you wouldn’t need that insulin!” When they try to tell me it’s not the same thing I ask them, “So, you can understand that a person has a chemical imbalance in their body, but not in their brain?” That usually does the trick. Not always, but usually.
I’m sorry that this person upset you over something which you have no control over. But I feel bad for people like that. It may be painful sometimes, but the view from this side of Normal is quiet stunning. Thanks for the wonderful post!
I want to say this was very touching! My husband has ADHD and yes, it’s frustrating when he doesn’t remember anything I told him or asked him to do but that’s only a symptom! It’s definitely not a choice! I too suffer from an invisible condition, Clinical Depression. I am a hot mess. Luckily, both my husband and I finally went to the dr. and we have been (dare I admit) 😉 put on the right medications and it has helped immensely.
haha. Again, very touching and you keep on doing you!!! You’re perfectly fine and ADHD doesn’t make up every single part of you! It’s just one little aspect of who you are 
People are so insensitive and don’t understand. The ones who judge and say rude things like that are also trying to compensate for their own issues by pointing out yours. I also work in direct care with individuals that have intellectual disabilities & other mental health diagnoses. People don’t choose to have mental illness. End rant
Wow, thank you posting this! My husband has ADHD and were now going to couples therapy so we can learn how to live with an ADHD spouse, understanding why he’s not good with schedules and remembering his chores, etc etc. it’s been a difficult process but I can appreciate so much more how he feels and how he functions differently than I do. It’s so helpful to see it from your perspective… Thanks a lot!
I read this at 2:15am 6 days before I am suppose to pack up my 2 small children and move across the country. Wishing I could turn my brain off long enough to fall asleep. I need to remember 8 as batteries for my daughter’s tablet. Don’t forget to tell the school Friday is her last day. Should I mail some things in advance to save room in our suitcases on the plane? What’s the max weight on those suitcases. On and on and on. Night after night since we started making these plans 4 weeks ago. Crap has it really been 4 weeks already? I am known at my daughters school from the several times I have forgotten to meet her at the bus stop and been called to go pick her up. I watch my Mom struggle with memory issues and habe had to remind her more than once that we had already had a conversation. I also remember the various things she went thru with me growing up that I now understand it to be ADHD related. I am grateful for the progress regarding ADHD symptoms and I try to be more understanding with my 6 year old. But the fact is I don’t have my own ADHD under control and blame myself for handing her a life long struggle. I believe I am a good and loving Mom, but there have been many a night she has gone to bed without dinner or a bath because I looked up and realized it was bedtime. I can’t stand letting my little girl down.
Your message and words are so true as well as being beautiful. Lets find a time to hang out!!
Thank you so much, Nicole.I so appreciate that! I’d love to.
Hey, I loved this. I struggle with depression, but it’s managed with medicine so I don’t have half of your struggle. You are brave and worthy of people who are not so shallow and insensitive to say something like that.
Jennie, thank you so much. On another note, I am so excited to see you on BonBon Break with your new book (Go YOU!)
As a stay at home mom living with anxiety and sensory processing disorder (and having the latter often set off the former), I can totally relate to this. I haven’t had anyone ballsy enough to interrogate me like your “friend” did, but when I was younger I was tormented in school for being clumsy and slow and, though I was book smart, often appearing stupid and “spazzy”, all by products of my disorders. These days, though I’m no longer teased, I still hear the annoyed sighs when I ask people to turn their music or the tv down, and I’ve been treated very rudely by impatient customer service reps when my disorders have me in slow spazzy mode. My husband has been very supportive, but we still have the odd fight where he doesn’t understand why I can’t just make myself make a certain phone call or do a certain thing. Its a difficult, frustrating thing, living with an invisible illness. Thank you for bringing it to the public eye.
THANK YOU FOR WRITING THIS POST!! My “invisible condition” is Fibromyalgia and I SO relate to everything you wrote … even the part about having a wonderful husband who loves me, lets me cry on his shoulder and reassures me!
The thing I see missing here, and in a lot of the comments is that there is NOTHING wrong with YOU and everything wrong with the IGNORANT them…..
Great blog! High fucking five!!!!!!!!
Reblogged this on prissymommy0129.
Love this, Michelle. Love the comparison to something visible and something invisible. Great post! — Jen
Your description sounds JUST like my OH which is really interesting. I’ve never heard of ADHD being described in that way, its always just kind of cast as a “naughty child disorder” so a huge THANK YOU for educating me. I am myself, a total control freak, ultra organised, member of the time police. I get genuine anxiety about things If I don’t have contingency plans and know I’m going to be early. It’s really hard for me when people are late or forget things, in a way though it’s kind of good for me to experience people who struggle time wise and organisationally because I’ve found it teaches me to be more mindful and present and forgiving. To understand that actually 9 times out of 10 the universe does NOT implode because ‘X’ was late or ‘Y’ forgot to do something. Don’t be too hard on yourself ok. Do your best, if anyone asks any more of you than that then THEY clearly have a bigger problem than you do x
Reblogged this on morganallison and commented:
I keep trying to “help” him get it together and then I find myself yelling and throwing cashews at him. Sometimes I think he is doing it on purpose. Sometimes I know he is. The hardest part is not being able to tell, not being able to feel empathy (because I have gone through the same thing) because I know that he uses this sometimes as a way to get out of things he does have control over. I’m overwhelmed and so grateful for the moments of peace I’ve had today.
We are just starting to face the world of ADD with our 6 yr old daughter. I am a medical professional and the word scares me as do the thought of medicating my child. I am blessed to have a pediatrician that takes the time to explain how it works and what we should expect. Even harder was trying to explain to my extremely vibrant daughter why we will be giving her medication. And, if the situation were different we would wait, but as we have had behavior issues it’s of most importance to start the medication now.
Michelle – there is a new book by Malcolm Gladwell called David and Goliath. I urge you to read it!
Amen my sister from another hemisphere.
Miss you! xo
Hey there! Miss you too!
Thank you. It’s a long story, but to make it short, because of a lot of right wing religious bigots who couldn’t stand my “poor character” because of these very same things (and my Aspergers, on top of it), and because of everyone else’s demands that I be uber-perfect/uber-social/etc., I don’t even get to have a real romantic relationship with anyone. You are fortunate to have found a marriage partner who loves you for real <3
Everyone is imperfect – I bet you those people are not nearly as good as you at thinking outside of the box, creating wonderful things and loving with every inch if their hearts. You probably kick ass at those things.
Reblogged this on Photographic Opportunities and commented:
Oh how I can relate to a lot of this with my epilepsy & the meds I have to take to try & control my seizures to a degree, well blogged – thank you x
Hello,
my son has ADHD, depression, anxiety, PTSD, Mood disorder(unspecified b/c age),ur story really hit home 4me, n describes 2 a “T” what he goes thru on daily basis, it is exhausting 4me n even harder 4him, he’s 11yrs old n i pray he’l make out ok!
He is lucky to have you to advocate for him and educate those around him.
I havent been diagnosed with adhd, but i recognize all of it in myself! I’m having all of those problems and positive parts aswell. I’m trying my ass of to improve myself but as you write it’s simply impossible allthough I’m going to therapy every week and have some medicines to make me better. Your story and comparisson to a wheelchairbound person was excellent. Every time I read something like this it makes me feel very glas that I’m not alone.
Sorry if spelling and words was wrong in what I wrote, I’m swedish:-).
Thank you for taking the time to reply, and I agree – it feels better when we discover we are not alone. Glad I could be there! (And your English is excellent!)
Wonderful blog my daughter has adhd and gad. I know its not easy. Check my blog out http:// faithgift.wordpress.com faith story and support and inspire parents with special needs. My fb page is https:// facebook.com/faithgft
Thank you so much for sharing. I’m looking forward to exploring your blog.
Awesome thank you
I LOVE IT, I KNOW EXACTLY HOW U FEEL, ONLY RECENTLY BEING TOLD DEPRESION ANXIETY PTSD ETC ARE ALL IN THE MIND AND NOT A THIRD WORLD PROBLEM BUT A FIRT WORLDE EXCUSE, IS THAT WHY ONLY 10 OF THE TOP 50 COUNTRIES FOR SUICIDE ARE 1ST WORLD, ITS THE OLD RIGHT WING LACK OF EMPATHY, IF IT DOESNT AFFECT ME OR I CANT SEE IT THAN ITS NOT REAL ATTITUDE, WAKE UP U INSENSITIVE NASTY PEOPLE
As a physically attractive woman, I hate that men prey on me because of it, and it’s widely considered **OK** to screw with the “crazy” woman. I used to blame myself so much for it, and it’s still a struggle at times. It takes up so much of my time and concentration to avoid pain, yet still be functional in a job or social situations imposed on me for the sake of my children. The very essence of what is attractive on a deeper level in people comes to question often in my mind, because, well, I get hit on a lot…then subsequently dropped in a heartless, cold manner. There’s nothing like the loneliness and rejection I suffer, because I can’t just blame it on the way I look or some other shallow factor. It has become a little easier as I’ve gotten older, and adjusted after several years since the “safety” of marriage, where even though I was miserable with the wrong person, I didn’t have to think about what was wrong with ME that makes people want to hurt me by using me for sex and then dumping me quietly, often knowing that anything I say only calls attention to my disorders which are a result of other peoples’ hurt in the first place. No one seems to understand this. I see others in the same boat and I want to scream “WAKE UP!!”. I want to call men out who do this (and the occasional woman who is cruel in this way as well, though it’s rare.) but it only gives them another batch of ammo. Then, I’m a crazy bitch too… Some days, it’s really tough. Even I say things that seem insensitive to others, and I totally don’t mean it. I’m in the dark, trying to find a comfort zone and connect to others, learning what I’m supposed to react to and what I’m not. I guess I’m saying I’m sorry for ever offending others in my pain, and to those who have been hurt like that, maybe do as I do and understand we all say insensitive things at times, not knowing how much it hurts. It is so good that you post this. It makes me feel less alone and calls out our failures as humans that we need to work on.
Awesome & so very well said!!!!
Thank you Clea-Rose (and GORGEOUS name, by the way)
Thank you for say what many of us cannot put into words. My personal wheelchair is depression, anxiety, and codependancy. These things just don’t go away, nor can you just ‘get up and do it’…
No they don’t just go away. I too struggle with several invisible illnesses, some physical and some mental. Co-dependency, depression, anxiety, and ANGER top my list. Five months ago I joined a group called Celebrate Recovery. It has helped me waaaay more than individual counseling and/or medication ever did. You could search on their national website to see if there is a group near you. Best wishes to you in your struggles.
Very well written. I have never heard adhd described by anybody who has it. And I honestly didn’t know anything about it. Thanks for sharing. It’s very enlightening.
Thank you for taking the time to read and empathise – YOU are the kind of person the world needs more of.
You so well described my ADHD! And people just don’t seem to understand all the other things that come with it and why. The depression, the insomnia, the forgetfulness. I have to be reminded of conversations, and when I don’t remember I’m told I “must have been drunk” (after 1 beer). It is SO frustrating to live with! On the other hand, I am extremely creative, and have made a living off of that for many years. You learn to cope. You have to.
Donna – If you are constantly forgetting stuff, blowing people off and generally failing to behave like a civilized human being and blaming ADHD while simultaneously demanding indulgences from the world at large — you are not managing your ADHD. You could — there are lots of techniques for doing so — but simply cannot be bothered to. And selfish enough to expect others to put up with you!
I am married to a man with ADHD OCD and Tourette’s and it’s a nightmare even on good days. You can be Mother Teresa and still find it paralyzing to live with a person with so many mental issues. Where is the sympathy for US? US, the partners who do it all and then some because of these invisible illnesses. I can tell you there are very few support groups for us, few if any web/ FB posting about OUR struggles to cope with these illnesses that litterally cause US depression, anxiety and physical illnesses because we are so tapped out and drained all the time because WE end up carrying most, if not all the burdens of life i.e. Paying bills on time, running the household, making sure schedules are met, taking care of the kids schedules/activities and the lists goes on and on. Where is the sensitivity for us?
Wow, Nona. Self-pity much? At least you have a choice…right?
Nona, http://www.wellspouse.org can help.
Hi,
Firstly what a great read. Secondly, I too have multiple invisible illnesses. I have mild Lupus SLE which causes mainly chronic fatigue. It has brought on my depression. And more recently I have been diagnosed with anxiety and a sleep disorder call DSPD (delayed sleep phase disorder). Which I have no doubt has brought on the anxiety due to never being on time for a 9am shift and management at my work place not being understanding enough to just let me start later and finish later.
I have been put on performance plans in my last and previous job. I have also had my union involved but have felt that they have not really done a lot for me.
I was told recently by my manager that, they can fire me as my Lupus or sleep disorder is not caused by anything at work. I have not spoken to my manger since she said that, but I can’t wait to walk in there and say. “Yes, you’re right. Those things weren’t brought on by my work environment but, not being treated fairly has brought on my Anxiety and a lot of the time I can’t sleep at night because I don’t want to go to a work place the next day where I am not accepted. Although I know I am a really hard worker and always work back or help others when all my work is done.
Apparently that’s not good enough.
Someday I will find a job where I am seen for the good I bring and not be frowned upon for being different.
Yes perhaps if I was in a wheel chair I might be treated better because it’s not invisible.
This was a great read. There needs to be more empathy for people living with ADHD. A majority of people do not understand how hard it is for us to actually process a thought. It is a struggle for us day in & day out, and trying to figure out the best way to deal with it. Trying harder does not work, but maybe trying different will.
My son has ADHD and I want to thank you for putting things into perspective for all who have this condition. It takes enormous amounts of patience to deal with his “quirks” as I call them, but I wouldn’t trade him for the world. He is one of the most kind, loveable persons I know. The part where you talked about being “crossed of the friends list” really hit home. He has no friends….people just lose patience and tolerance with him so easily. However, he is so funny….and his view on things is priceless! I truly want to thank you again for writing this and helping people understand what it’s like.
Yes, ADHD is a chronic illness that is not the person who has it’s fault — just like alcoholism and depression.
Like alcoholism and depression, it IS the responsibility of the adult with ADHD to do whatever is necessary to manage their chronic health condition. People with alcoholism tend to stay away from bars and attend 12-step meetings. Folks with chronic depression often take medication daily, have a therapist and/or make a point of exercising regularly. They do what needs to be done and do not blame others if they, say, relapse. Adults with ADHD should be expected to do the same!
By that I mean that this blogger needs to take responsibility for her ADHD — medication (if her doctor feels it’s appropriate) and whatever combination of cutting out non-essential activities, schedules, alarms and reminders she needs to make ensure she gets whatever it is she needs to get done, done.
Oopsie I lost track of time? Not a valid excuse in a grownup who acknowledges their ADHD. Set alarms, set backup alarms, do whatever it is needed to get to the doctor’s appointment or coffee date with a friend on time.
Lost your car keys again? Not a valid excuse in an adult who acknowledges their ADHD. Put a hook next to your front door, your office door and buy a purse with a zippered compartment and ALWAYS put the car keys in those and ONLY those specific spots (or come up with whatever system works for you).
It’s not like ADHD is a rare and not well understood illness — it is well-known and well-understood. There are any number of medications, therapists, doctors, organizational systems, etc out there and this blogger’s (and every single other adult with adhd’s) RESPONSIBILITY to manage their illness. Not to beg for forgiveness and understanding!
Because, frankly, saying “oopsie! My ADHD brain is a get out of jail free pass” doesn’t fly in an adult — saying that and begging forgiveness for the 3,547th time you missed a doctors appointment, failed to pick your kid up, clone home from the grocery store without milk and forgot to take your kid to mini-golf as promised is that ADHD grownup saying “I’m soooo special and important and my time is soooo much more valuable than everybody else’s so just put up with me!!”.
Dear Kaytee,
Way to completely miss the point.
I would tell you a few things about how responsible I have been for my entire life and how being responsible simply doesn’t make up for the times when my ADHD brain decides to take a holiday, but I have a feeling you’re one of those people who will just tell me to try harder and that I’m just making excuses.
Tell you what: You take responsibility for your ableism and bigotry, and I’ll take responsibility for the things I have difficulty with (as I always have) and we can live our lives.
Here is to you trying to embrace who you are, we all let others down. Embracing our shortcomings is much healthier. Reality is those who can be nasty and horrible to others are letting people down. They just do it with thought less disregard for others feelings, not with our genuine regret that we again let life get away from us. Here is to not being perfect, because no one is, and recognizing where we need to work harder and trying to improve on our foibles. We are loved for who we are and that is greater than all the material riches 8 the world.
a page from every day in my life. Thank you so much. You put it very well. I hope that people understand there are things that we are excellent at…
Dear Kaytee,
Way to completely miss the point.
I would tell you a few things about how responsible I have been for my entire life and how being responsible simply doesn’t make up for the times when my ADHD brain decides to take a holiday, but I have a feeling you’re one of those people who will just tell me to try harder and that I’m just making excuses.
Tell you what: You take responsibility for your ableism and bigotry, and I’ll take responsibility for the things I have difficulty with (as I always have) and we can live our lives.
I wish I could delete this one, I wrote it when I didn’t see how to reply above. 😛
Even though my brothers wife n kids have adhd and aspergers I have never really understood their habits as well as this, a fault on my part…. just always seen them as “them” thanks to this, which I will share on fb , I may be a little less frustrated when they mess up my well laid plans because she forgot to make a phone call, or where’s that list and set of receipts I gave you will not next time be met with me rubbing my temple in frustration. …. For all my past indiscretion I apologise a thousand times. Sorry Bro n sister in law n two of the most energy filled kids I have ever met. Love you lots n can’t wait for our weekend away next week, I will keep this page at hand just so , at those most annoying times when you all push me a little too far, I can quickly pull out my phone and read these eloquent words of pure insight.x x x
Laurence, you just made me cry. Real tears. THIS is why I write. THANK YOU.
Great read! Thank you for posting this and raising awareness!
I was diagnosed with Combined ADHD about a year ago. I’ve written about challenges and experiences going through life undiagnosed; how it affected my academic life; professional career; managing symptoms; raising awareness.
http://nealgardner.tumblr.com/post/79542803948/look-theres-a-squirrel
Wonderful – I loved the way you turned it all upside down and showed the positives too – it is so important – it’s the only way sometimes to just get through it all. If you ever feel like coming and joining a cloed group on facebook for people with any chronic and invisible illness, please message me. You would be an absolute asset to our group. Or message me through my page Pifflers United Worldwide. I hope you don’t mind but I am going to try and share this on my page and in my group. i wish you well. tracy
Tracy, I’d love to join your group. Thank you!
Maybe someone’s commented to this effect already, I don’t know. I don’t have the spoons to go through 75 comments. But I couldn’t just let this go unsaid.
For a post about how people shouldn’t be so insensitive toward those with invisible disabilities, it’s INCREDIBLY insensitive to wheelchair users.
You act like either these sorts of things aren’t said to wheelchair users, or that people universally recognize them as wrong. That could not be further from the truth. People CONSTANTLY verbally assault me while I’m in my wheelchair, not only demanding all the details about my condition, but also lecturing me on how I’m lazy, selfish, sometimes EVIL for being in my wheelchair. I’m told that I don’t just try hard enough to walk, that if I cared about my daughter I’d walk, that I need to pray to Jesus so I can walk, so much ridiculous bullshit you can’t even imagine.
And that’s just it–YOU CAN’T IMAGINE. Yet you pretend that you can, and speak for wheelchair users as if you have any idea about our struggle. Walkers have NO RIGHT speaking about the experiences of wheelchair users, FULL STOP. It is ableist.
Think of it this way: Completely invert the piece. Let’s say I was writing it, and I was talking about how obviously people with ADHD don’t go through this stuff, because people know it’s shitty behavior and they’d never do it, or they’d recognize how wrong it is. That would be EXACTLY what this piece is doing to people like me. I would have no right to assume people with ADHD are treated well wrt their condition, because I don’t have it and know nothing about it. And assuming that people don’t treat you poorly, or that they know it’s in bad taste to do so, would obviously be a false assumption, yeah? Well so is this.
Please, review what you’ve written and recognize how ableist it is. It’s extremely hurtful to those of us in wheelchairs.
Bunnika, from the bottom of my heart I apologise for offending you. Please know that I NEVER intended to hurt wheelchair users (I am mortified at this very thought!) and I humbly offer my sincerest apology to you. You are absolutely right – I cannot imagine that people would say things like that to people in wheelchairs! What kind of people are these? Clearly, I am naive because I believed that people aren’t quite so baseless as to a) believe someone with a disability has chosen it, b) that the person in a wheelchair somehow possesses magical powers to get up and walk and c)utter such ridiculously stupid and cruel comments like the ones you’ve detailed above.
I have nothing but respect for anyone who has a disability of any kind, be it mental or physical. The world is hard and judgemental enough without having to contend with additional struggles.
For you to feel judged by me is mortifying and I hope you will accept this explanation and apology for my ignorance and naivete.
I was simply trying to illustrate that invisible struggles are no less real than ones people can see – such as traversing the world in a wheelchair.
Thank you so much for opening my eyes and taking the time to educate not only me, but my readers. I wish you well.
Thank you for your thoughtful reply. It’s really hard to make comments like that, because of the fear of backlash. It’s always so welcome when people understand where I’m coming from.
I think part of the problem is that you’ve got a narrow scope of why people tend to be in wheelchairs. I have many wheelie friends, and none of us are paralyzed. For example, I have Ehlers-Danlos Syndrome, a connective tissue disorder. I can walk, but it’s painful and dangerous (especially as I have a half-dozen other invisible disabilities, including a heart disease that causes syncope, making walking even scarier). My friends have everything from Complex Regional Pain Syndrome to Lupus to Multiple Sclerosis. We deal with a special sort of ableism, as people catch us in “gotcha” moments where they see us move our lower bodies and then attack us for “lying” and not needing our wheelchairs. And, while I’m a part-time wheelchair user, I also have to keep in mind that I still have privilege over those who are full-time users. The fact that I can step out of bed in the morning at all is a HUGE privilege, and one I don’t take lightly.
I’ve blogged somewhat about my experiences as a wheelchair user, if it would be of any help to you. (It’s with some other disability entries here: http://bunnika.wordpress.com/category/ableism/) I don’t mind “educating” when someone’s willing to listen. It’s a nice change of pace from all the abuse I take most times I raise an objection. Wheelchair users actually get glossed over a lot, like since we only come up waist-high our opinions are only half as valuable. I can’t really explain it, it’s just some really deeply ingrained prejudice.
Thank you, Bunnika, I’ve followed your blog now and will absolutely educate myself further. I had never thought about how the world must be for people in wheelchairs because of other conditions – you have opened my eyes and, I hope, those of my readers.
Of course I welcome your comments! We can all stand to learn and improve ourselves and become better human beings. Your opinions and comments are 100% valid and 100% wwelcome.
Maybe someone’s commented to this effect already, I don’t know. I don’t have the spoons to go through 75 comments. But I couldn’t just let this go unsaid.
For a post about how people shouldn’t be so insensitive toward those with invisible disabilities, it’s INCREDIBLY insensitive to wheelchair users.
You act like either these sorts of things aren’t said to wheelchair users, or that people universally recognize them as wrong. That could not be further from the truth. People CONSTANTLY verbally assault me while I’m in my wheelchair, not only demanding all the details about my condition, but also lecturing me on how I’m lazy, selfish, sometimes EVIL for being in my wheelchair. I’m told that I don’t just try hard enough to walk, that if I cared about my daughter I’d walk, that I need to pray to Jesus so I can walk, so much ridiculous bullshit you can’t even imagine.
And that’s just it–YOU CAN’T IMAGINE. Yet you pretend that you can, and speak for wheelchair users as if you have any idea about our struggle. Walkers have NO RIGHT speaking about the experiences of wheelchair users, FULL STOP. It is ableist.
Think of it this way: Completely invert the piece. Let’s say I was writing it, and I was talking about how obviously people with ADHD don’t go through this stuff, because people know it’s shitty behavior and they’d never do it, or they’d recognize how wrong it is. That would be EXACTLY what this piece is doing to people like me. I would have no right to assume people with ADHD are treated well wrt their condition, because I don’t have it and know nothing about it. And assuming that people don’t treat you poorly, or that they know it’s in bad taste to do so, would obviously be a false assumption, yeah? Well so is this.
Please, review what you’ve written and recognize how ableist it is. It’s extremely hurtful to those of us in wheelchairs.
(This is a response to Kaytee’s comment above. I wrote this as a blog post; it’s the Pingback called “Responsibility. | Disability Thoughts” if you want to check out my disability blog.)
ADHD is a neurological condition (not a chronic illness; I am not “ill”) in which our brains simply do not work the same way as the brains of non-ADHDers. It is not our fault that our brains function differently.
[The comment makes comparisons to alcoholism and depression here and I am very uncomfortable with such comparisons, so I’m not going to do that here.]
It is important that people who have ADHD take responsibility for themselves and their lives. Explore treatment options, learn coping mechanisms, and develop and implement techniques and methods that help us manage our symptoms. When things don’t work, we need to be responsible and make changes and figure out what didn’t work and why, so that we can get things going again. Blaming other people is not a thing we usually do; blaming ourselves, on the other hand… incredibly common.
I have taken medication. I was diagnosed in February 2005 and took Concerta, then Dexedrine, then Strattera, then Dexedrine again. I stopped taking medication in 2008. In 2010 I started taking Adderall, and I took it until July 2013. I stopped because the medication was giving me indigestion and causing me to hyperfocus and giving me anxiety. And amazingly enough, the systems I had implemented while taking Adderall held up to the lack of medication. I have now been med-free for eight months, and I am doing really well.
I do not have a job outside of my home. I am a housewife and I work from home. This was necessary due to anxiety and how completely working decimates my executive functioning. Add to that my introversion, and you have someone who really needs to be alone a lot of the time anyway. I have used alarms, I rely on my day planner, I have routines in place to help me stay on task and get stuff done.
Here’s the thing about ADHD: even medicated, even with all of the strategies in place you can think of, even with all of the “fluff” taken out of your schedule (and then what fun is your life?), even with all of those things in place… ADHD is inconsistent. The only consistent thing about my ADHD is its inconsistency.
I lose track of time really easily. This is a hallmark of ADHD. Time is not concrete. I set alarms, I write things in my day planner, and I aim to leave at least half an hour before I need to be somewhere because it takes half an hour to get to the city from my house. In fact, I plan to leave 45 minutes to a full hour early so that when I am actually heading down the driveway it might actually be half an hour before I need to be wherever I’m going. That strategy doesn’t always work, of course. And when it doesn’t, I try to text or call my friends who I am going to be late for (same with babysitting). I don’t have to worry about appointments because I make them for during a weekday and I spend the entire day in the city so that I can be on time for the appointment without having to worry about that half-hour drive.
I don’t lose my car keys because I keep them in my purse. When I didn’t carry a purse, I kept my wallet and keys in a bin by the front door. Most of us have these systems in place. When we do lose something like this, it’s because our system got disrupted somehow. We dropped our keys or got to talking to someone on the way into the house and put them on the counter instead of the bin by the door and then the mail went on top of the keys and they’re missing because looking underneath things is hard.
ADHD is well-known, to be sure, but it is absolutely not well-understood. We have to deal with jokes about squirrels, comments about how we’re just making excuses, articles by doctors about how ADHD doesn’t exist, and diatribes like the one I’m responding to. We are doing our best. We are trying as hard as we can. We are being told, at every turn, that we are lazy, that we are incapable, that we are incompetent, that the label that helps us understand ourselves is fake, that the medication we take to manage our lives is unnecessary, etc. etc.
“Taking responsibility” for our disability (yes, it is a disability for most of us, please don’t pretend otherwise) means trying everything and still failing. It means that sometimes we are going to have to say “I’m sorry, my ADHD makes that really hard. I’m working on it.” It means that sometimes we need your forgiveness and understanding, because we did our best and everything fell apart anyway.
Because, frankly, listening to you tell me that I’m just making excuses doesn’t fly in polite company. It is disrespectful for you to assume that you know all about my life and how I manage my disability. You need to understand that when I have an ADHD-related “oops” that is not me thinking that “I’m soooo special and important and my time is soooo much more valuable than everybody else’s so just put up with me!!” [I quoted that bit directly. It was too perfect to illustrate this person’s attitude.], it is my ADHD choosing to bugger things up so that I look irresponsible.
I am not irresponsible. I am the complete opposite of irresponsible. I am not inconsiderate, either.
What I am is a person who has ADHD.
And that is not an excuse, it’s an explanation.
Amen. To the power of ten. And a fist bump.
I am so sorry you look at ADHD in this way. Before you jump to conclusions of my fisrt statement I was diaginosed with ADHD in 1970, undiaginosed seizure from age 6 until age 27, and dyslexia. I had to learn how do thing in ways that made sense to me; without medications or any support group. The hard part was school, some of the teachers believed I was not appling myself, when in fact it would take me six or more hour do homework. I had to make my decision early in life was I going to be a victim of my conditions or was I going to stand up
This post isn’t about feeling sorry for yourself. I’m sad that that’s what you got out of it.
The post (well, to me, as a reader) is about how much we struggle every day to get stuff done and be as responsible as we want to be. It’s not about giving up, it’s about pushing and pushing and pushing. It’s about how we get beaten down by people who don’t understand (and often don’t want to understand). It’s about the thoughtless things those people say to us.
And I don’t care if you DO have ADHD, “try harder” is just as insensitive coming from a fellow ADHDer as it is coming from a non-ADHDer. More, even, because YOU SHOULD KNOW THIS WITHOUT BEING TOLD.
Reblogged this on Learning Outside The Box and commented:
Regarding my chronic condition, Fibromyalgia. Here’s an interesting blog.
This. Oh my god, THIS. Thanks for articulating what I’ve been trying to say for almost half my life now. As another person with especially invisible ADHD (my hyperactivity doesn’t manifest outwardly), it’s great to hear someone else describe just how much it hurts to know what it’s like to be judged for ADHD behavior. I also have PTSD with dissociation, so my memory glitches constantly, so people think I’m a total flake. If they only knew how much time and effort I put into remembering *anything,* maybe they’d think twice! Thanks again for your words. I feel so validated!
You’ve just made my day – so glad to find another member of my ‘tribe’.
I too have ADHD. I can’t stand how unorganized I am. My boss thinks I’m one of the most organized people she knows which is funny to me because I still struggle despite my efforts to keep everything together. The part that makes me sad is knowing how much better I could be if I didn’t have ADHD. The statement about another organisation system failure really but home, but I keep trying. And God knows ‘Time’ is not my friend; it taunts me.
Julie, I hear you loud and clear about your boss thinking you’re organized. I still can’t believe I managed to get through a two year massage therapy course that involved extremely detailed learning of anatomy. Origin and insertion of all the muscles, what nerve drives them, names of arteries and veins, bony landmarks, techniques and their effects on the nervous system, pathology, metabolism, the Krebs cycle… So much to keep track of! And I pulled it off with honours. But, it nearly destroyed me and my sweet little boy who had two years of a crazy mother on the verge of a breakdown at all times. It’s my biggest regret. I didn’t know I had adhd at the time. I wish I could have those two years back with my son. Screw school. Screw massage therapy. It took superhuman effort to accomplish what I did. And while I’m glad to know what I can do and accomplish if I buckle down, I also know what the price is and it’s a price I never want to pay again.
I’ve learned to accept my adhd and I’m finding a much better career fit as an artist.
I admire you for persevering in an environment that is so challenging. You’re made of tough stuff!
Lets not forget lymes disease ! That’s also very invisible…
I have ADHD as does my son. I was dx as an adult so I have learned to live with the comments about how ‘ditzy, flaky, goofy, loud’ I am. (Most days its impossible for me to stand still even with meds, and forget even attempting to sit still)
After the dx, so many things were explained. However now of course, I hear, as I’m sure many others do: “oh yeah. I forget stuff too. I think I have some ADHD.”
I politely smile and say everyone forgets things. Its possible ADHD when it affects every aspect of your daily life.
Oh my God in Heaven I love you! I also read about your train wreck and laughed so hard at the same time as crying for you! I so needed to read about you today!
Thank you for this GORGEOUS comment, Kathleen – glad the diarrhoea and vomit tsunami gave you a laugh – kinda makes it worth the pain ;p
You have explained exactly how I feel suffering with Bipolar Disorder, and what I have been going through my whole life and moreso in the last week since I have decided to stand up and make my voice heard. Thank you and I applaud you loudly for your honesty and for all the strengths your disability has given you that some so called “normal” people will never gain x
Thank you for this! My daughter is really struggling and I have family that refuse to acknowledge ADHD even EXISTS. I look forward to showing them your article!
Thank YOU – comments like this one make my day.
Great read. My little boy struggles with all those things but sadly his anxiety disorder on top of it stops him seeing those silver linings. He really doesn’t function well at all in the strict rules of society so we homeschool him, which seems to attract many strange comments too. I once had a pest control guy asking me a million questions about why my son wasn’t at school during the day, and by the end of his visit despite all my explanations, he came out with, ” we’ll I don’t see anything wrong with him! He seems normal to me.” Sigh.
I felt like you were talking about me! Every word you said had me shaking my head in agreement.
Reblogged this on Pajama Diva and commented:
This.
Wow; it’s truly sad that a person would say this stuff OUT LOUD! That must have been so painful for you. On the other hand, I think that particular individual might have another frontal lobe issue — lack of impulse control!
My mother let it slip once that she wondered if I should be hospitalized! Your blog entry got me to appreciate how far I have yet to go in seeing my own ADHD as something other than a character defect.
Thank you for writing this. I have a son with ADHD and most of the days I think I also have it. Not like him but in some ways it relate. It’s hard for me to understand so I am consatantly looking for people to tell me what they go though. It helps tremendously. It does. And the one thing I do know is how special he is. He is one of a kind and I would not change that for anything in this world. He is magic!
Wow!! Except for the part about being good at painting and husband not having ADHD (mine does) I could have written this post!! It is an amazing feeling to know that others can relate to what it’s like to be me! Will definitely be sharing on Facebook. Thanks so much!
Brilliant!
You already have loads of comments, so someone else may have already said this, but here is my initial reaction to your story: most likely this woman has (or should have) a diagnosis of her own. There are a number of brain disorders that impair social functions and impulsivity, and those are invisible too. Knowing that doesn’t necessarily make these comments easier to bear, of course. Thanks for writing your story.
Thank YOU! I don’t have ADHD, but I am lucky enough to have Depression, Anxiety, Fibromyalgia, Chronic Myofascial Pain, Hypothyroid and IBS. No one gets it. Not my family, not my husband, and only 1 (new) friend (and that’s cuz she had lupus and colitis). Not even my sister, who has MS, gets it – she’s probably the worst – I should “just get up and move, you’ll feel better”.
Reading your story reminds me that it’s not just me – there’s others going thru similar intolerance. I’m learning to cope better. I still don’t get why people would think I choose to feel this way all.the.time, while I’d really much rather be out playing with my kids or any number of things!
Anyway – I just wanted to THANK YOU for your story.
Loved it so much – I shared it on FB with the following post: Yes – it’s hard to be married to me. But I am so surrounded by great people who love me. That’s what keeps me from, and brings me out of the pits of despair I fall into.
So tired of continually failing, letting people down, and being late for important things. For feeling second best, or not good enough.
Look what the Lord has done for me. He has given me a job that I CAN’T do on my own, and a fantastic team to do it with. I’m so lucky for my family. Please read the following article. It’s hard to read, but it’s a good thing.
Then I clicked to “follow” you’re upcoming posts because you sound like a best friend I haven’t met yet. Way to go – and thank you for your honesty and for putting into words what we go through so frequently.
Hopefully this will help all the Muggles understand a bit.
Well, even after being married to my husband for 30 years, this post has given me the most insight into what it must be like to live in his world. And I feel bad. I am always giving him a hard time about forgetting, about not being aware of the time, about conversations we’ve had that he claims to never have heard, deep down figuring it really was more under his control and if he would just TRY a little harder he could get it. Boy, you really nailed it. I am rethinking a lot of stuff and want to thank you so much for your brutally honest post.
wow you made me cry…thank you. so nice to meet someone who is the same but I also love the end where you celebrate our strengths. <3 <3 <3
Thank you so much for explain this so well. I really needed to read this today and feel like I wasn’t alone in the world of these experiences. I am still learning about my condition and it’s so wonderful to read your article and realize that vague confusion which i thought was insanity are actually describable symtomps. thank you thank you thank you xxxxx
Try having attention deficit AND being in a wheelchair for the past 29 years! Lol. I have a wonderful service dog who goes everywhere with me. A couple weeks ago at the mall I stopped at a bench to re-adjust my packages and check my Facebook when a man came out of nowhere and states “so, are you blind, too?” I laughed at him and said “if I was blind how could I be reading and texting on my phone”? He sat down on the bench so I promptly gathered my packages and my dog and left!
I stumbled across this article because I have fibromyalgia.
But I think it has a wider relevance.
I’d like to see everyone be kinder to one another, see the good in everyone, and overlook the shortcomings. This goes for me too. I’m struggling with the feeling of being judged, and I know it’s because I’m judging others.
Why do I feel like I’m not good enough, and why am I so quick to judge others as not good enough? Good enough for what anyway?!
If I was your friend I wouldn’t bother with scheduling lunch dates, I’d just rock up on your doorstep with some sandwiches!
To be a good friend is to know what works for both of you, to glow with the tide and not struggle against it.
While I’ve been on a bit of a down swing & don’t have some of your energy, the rest of your article could have been me. If we could get it on a t-shirt it would great “my illness is invisible; your rudeness is not” how does that sound.
I have chronic migraines. I’ve been in pain 24:7 for over 12 years. When I tell people they generally look at me like I’m making it up (including doctors). I didn’t say I have a level 10 pain all the time, although I’m lucky to get below 3. So yes, there are days I can drive, shop, etc. but there are days I can’t. I spent the entire Easter weekend in bed.
I think I’ll go work on a logo for the shirts. Thanks for the article.
Your blog post hit a nerve with me as its happened to me. I use a wheelchair outside of the house and have had that conversation with a complete stranger. Ive also had friends say to me ” You’re so brave, I would kill myself if I had your life”. How lovely of them to comment on the quality of my life. I am not dying I just have a strange illness that not many people have heard of let alone understand. I’ve even had someone say to me “if I was your husband I would leave you” I think he forgot the bit that he said wasn’t it “for better or worse, for richer for poorer, in sickness and in health” I sometimes wonder how I manage to keep my mouth shut and a smile on my face when greeted with this kind of sheer ignorance. Thanks for posting and letting me know I dont face this sh*t alone!
Rachel@themyastheniakid.blogspot.co.uk
Bravo to you! My son has ADD & often I have thought I do too. I also have RA, 2 spinal fusions, multiple herniations, spinal stenosis & osteo arthritis all due to an accident. Very few understand invisible illness no matter where it is. I can’t stand when people ask me how I am & instead of getting into detail I usually say I have had better days & their response almost always is “but you look good”. I am an esthetician & know how to use makeup effectively to cover up my tired eyes. If I walked around everyday with no makeup people would constantly say I look sick. I get tired of talking about my illness & pain that I make sure no one knows by using makeup. What I do find more upsetting is the lack of understanding of ADHD, especially with teachers. I think my son has been judged more by teachers than anyone else. They consistently comment that he is lazy!!! If only they could switch brains for a month, then there would be more understanding!
Chronic myofacial pain and arthritis here- some days I feel as if I AM those conditions, and I thank you for writing this! Today I was able to participate in life, but some days I am not. Invisible disorders are hard enough to deal with, without people being thoughtless and ignorant!
I have family members with ADHD your story made me understand them better. I was never harsh or judgemental to them but u did shed light on the subject, for that I thank you!! God bless u and all with invisible problems.
Thank you for being someone who is open to peeking, with no judgement, into another person’s world. 😀
An eloquent description of the frustrations (and joys) of having an ADHD brain, thank you. Substitute cooking for painting, and you have described my life. My boyfriend often wonders how it is that I am such an optimist; I tell him I have to be, otherwise I would melt into a little puddle of depression (and sometimes I do, but I still try try try to look on the bright side).
You said everything I’ve wanted to say for years. But my mind just couldn’t get past the frustration of people not getting that ADHD is as real as any other mental illness or disorder. Thank you.
I love your illustration about the woman in the wheelchair. People always tell me to move on. As if I could stop myself from thinking. I know too how they are tired of me talking on things all over again.
You are a very strong woman. I admire you.
What a bold, poignant description of ADHD. Thank you for sharing your beautiful words. The emotional and spiritual pain resulting from this affliction is somewhat offset by amazing empathy and insight.
You could be my twin sister! I love you already! You rock! Keep on keepin’ on 😀 Your sister in spirit, Christy Mrotek <3
Thank you -i struggle with Fibromyalgia & although there are some pretty rotten people out there -people that don’t know you or I. They sure know the right things to say to cut you down & call you lazy. A FB page caught my attention today, & I do know i can be difficult to live with & I try really hard to “get on with my life” despite my constant setbacks. I would do anything to NOT have this. Not ever. I would have been classified as a Type A personality prior to this diagnoses. I worked my butt off for over 20 years, I went from being a single mom at 21 to continue school, work full time at my new profession and take care of my little boy. I had trouble with insomnia for many years as well as migraines and depression. I also quickly realized how hard this was. But I kept it up because I had too, because he deserved it from me. i did this alone for years, the man i married 10 years later had 3 small children. I did not know what I was about to take on. On the way down (nervous break), never had I worked so hard in my life, But I just want to say this page I found is called “Fibro is NOT a real disease”. Normally I don’t let people get to me, especially if they don’t know me. I would never pre-judge what I don’t understand. My family is so good to me they believe me, even my mom. With just this; I know how lucky I am. I do let my condition get to me. I miss so much of my previous life, the boundless energy the working, I do truly miss working. I loved being an administrative assistant I know it probably sounds silly to like being ‘a secretary’- I felt part of something else, besides being a wife & mother. But that day came “the flu” that showed up then never left me. March 2010 – after my daughter was born in 2007, after my horrific car accident in 2008 and having my marriage fall and shatter for the first time in 2009 I had no more defenses, nothing could protect my world from crashing not even myself. My marriage had become this nightmare & after my mother in law died of cancer, my husband was no longer the man I married. I was now in charge of everything more than I already was doing, I was in a wheelchair for a month at least, and had 1 yr old daughter as well as a 7 yr old girl, an 11yr old boy, a 12 yr old boy and a 15yr old boy to care for as well, a house to run and bills to pay with no money because he quit his job when I was approved. & until 2012 when I was finally approved for disability. I left him for the second time- I wasn’t coming back, I was too sick to move off my mothers couch & I had just woken up. My marriage did survive it was only a true Miracle from God that it did, it had no rhyme or reason to survive it just didn’t. But truly I digress. My point is: I agree with you its hurtful- people know how to be cruel. I just remind myself they don’t know me, they don’t know my story, they haven’t walked in my shoes & they can’t possibly know what this feels like if they don’t have it. If they don’t believe its real, why make an entire FB page on it? (Its obviously has affected this person, they are angry at someone who claims they have it & that has made them bitter) Its like stating you’re an atheist, then being mad at God, well hello?! Lastly, my favorite saying from my grandfather “take everything with a grain of salt.” Don’t believe everything,just because someone says its so… Take care Angela