Guest post by Ania Bula. Ania blogs at Scribbles and Rants.
When I was 18, I was diagnosed with Psoriatic Arthritis. The following year, I lost the ability to walk, and was ignored by doctors who looked at my age before my symptoms. I struggled with finding a treatment and getting some mobility back.
When I was 20, I started experiencing some mysterious symptoms, including rapid weight loss, pain, bleeding, and more. I desperately searched for an answer, and eventually, a treatment. What would turn out to be Crohn’s disease came very close to killing me. I was flushing my life down the toilet.
The journey itself, to diagnosis and treatment, was incredible, difficult, and enlightening. Chronic illness is an invitation for everyone to comment: either with regards to a cause, a treatment, or otherwise. Suddenly, everyone’s aunt is an expert and everyone’s fad diet a cure. You wade through a constant stream of ignorance and lies, in a desperate attempt to find peace and a stop to pain. In my years living with both disorders I have been faith healed, poked, prodded, stuffed with powders and magic potions.
When your disability isn’t written across your body for the world to see, there is a constant need to validate your need for self-care. There is also something more isolating about not being able to readily identify other people who are going through the same thing you are. When you walk down the street, you can’t know just from looking if someone else out there knows what it is like to feel your pain.
Healthy people don’t know how to react to you. Some trivialize your experiences either because they don’t believe you are sick or out of a desperate attempt to convince you that they are not judging you based on your disability. They point out that you don’t look sick, or that other people they know with the same condition don’t have nearly as much trouble. Some will try to blame other causes that have nothing to do with your condition. Others are thrown to other extremes and feel like they must keep reminding you of your weakness in order to keep you from harm. They overcompensate for their own discomfort, by making it seem that they are looking out for you. These are the people who are hyper-alert for any sign that you are not at your best so that they can lecture you about taking it easy. Since you are never really at your best, this can get grating really fast.
It is difficult to strike that happy balance of treating you like an independent human being, who sometimes needs to be more careful about what they eat and do, or perhaps cannot go out as often as everyone else. You might feel as though you constantly have to justify yourself. That no, it is not just laziness that kept you in your pyjamas all day, or that you really do like their cooking but that yogurt keeps you up in pain all night. You worry that eventually everyone around you will be sick of trying and that you will be left friendless and alone.
Throughout all the self-doubt and loneliness, you are also struggling with managing your symptoms. No matter what your condition, exhaustion is a constant. Being sick takes a toll on your body and your mind, so that some days it can be an effort just to get out of bed. For many of us, pain is another constant companion.
I am writing about my experiences in a book called Young, Sick, and Invisible: A Skeptic’s Journey with Chronic Illness and I am funding it through IndieGoGo. Your support will help me through the writing process, while also rewarding you with a copy of the finished work. In the long run, I am hoping to raise awareness about what it is like to have an invisible disability, as well as highlight the evil of the con men peddling alternative “medicine” and “miracle cures”. I need your help to make this happen. Every little bit helps, as does every share and retweet.
I thought about but never got around to getting a t-shirt that says “this is what disabled looks like.”
The idea came to me after one too many people called me a con man. Many others said “you don’t look disabled to me,” etc.
I’ve had bus drivers try to deny me the disability discount despite my card, other passengers call me “just lazy…”
One person online said “unless you’re typing with a mouth stick, you’re not disabled.”
Thing about the shirt idea is that even people who aren’t disabled could wear it in support and it would still be true.
Thank you for the timely reminder.
Totally with you, Ania. It’s amazing how stubborn people can be wen asked to believe someone’ sown account of their health.
Thanks for altering us to this.
This sounds like it would be an interesting read. I have to keep most of my own health problems concealed from most of my friends because they’re such strong advocates of alternative medicine — including pretty hardcore quackery. Frankly, their emotional support and sympathy simply wouldn’t be worth running the gauntlet of helpful suggestions of woo: when I turn them all down, I know they will assume that I’d rather ‘be right’ than be well. And then they’ll be sympathetic about that.
I look forward to reading the book!
Also, see the Spoon Theory: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
My girlfriend suffers from Gastroparesis, another invisible illness. She recently posted this on Facebook, and felt I should share it in this thread. It’s a bit lengthy, but worth reading.
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I forgot how emotionally painful and draining not being able to eat anything is. Being around food, people eating, and knowing you can’t touch it. Walk into a kitchen and know there is nothing in the entire room you can touch, except a sip of this or that (or the one glass of tea I have to drink no matter how sick it makes me feel.) You never know if you will ever be able to enjoy that piece of chocolate or cookie again. Fighting the constant nausea, fighting to maintain my weight again, fighting to maintain a quality of life. The sacrifices I, and my GP family make, everyday. Put yourself in our shoes, try to feel the fear, anger, and pain. Then know that you don’t have the energy to deal with it, so you lay in bed and you suffer. That is what so many of my GP friends deal with everyday, and they deal with uncontrollable pain, the loss of a way to make a living, the loss of friends, both because they have been abandoned, and because their friends have died from this. The treatments are not adequate for so many, the doctors shake their heads as they have nothing left to offer. But we are a family, with the same love, dedication, and care that any family can provide. I will suffer, and feel alone and isolated. Then I will remember all those who know what I am going through who support me and all of those who support me even though they can’t imagine what a day in my shoes is like. It helps. It doesn’t take the nausea away or the yearning for food or the desperation to work. But it helps. All my love to my GP family who are going through their rough days and their good days. Know I think of you all, but I don’t always have the energy to say so or to reach out. But I hope knowing this helps.
@Jayyoung I am quite familiar with Spoon Theory. 🙂 Awesome blog and theory. The original working title for my story was going to be, But You Don’t Look Sick, but I realized that the blog was building a brand with that phrase and didn’t want to poach.
Re: the paragraph. Beautifully written. Thanks so much for posting it. If you replaced GP with Crohn’s it would be really hard to tell the difference. My love and best wishes to her and others in her GP family.
Thank you to everyone for the support.
It is scary how many of us live with these invisible disorders. I think it is high time there was more awareness about this issue.
Yes. I have MS, and I have it under control most of the time. I ration my energy and I usually get through the day alright. But then nobody sees that I can only do so much. Then I overdo it and end up in a miserable heap. The spousal unit will say, let’s take up skiing again, and I feel like I’m stopping his fun when I say, I can’t do that for more than 2 hours a day. When I get home from work I print the crossword and sit down for 30 minutes, else I can’t handle the evening. So he says, oh, having a rest are we, couldn’t we mow the lawn? He’s a good guy, he just can’t understand.
The world is a toxic place these days, and you folks are the canaries in the coal mines…disorders like yours are the wave of the future for a rapidly growing number of people, and unless we stop putting filth into the air, water, and food supply, things are only going to get worse. My condolences to each of you, and thanks for putting your stories out there for the ‘so far’ un-afflicted. We need to know there is fallout from our waste, greed, and stupid choices, concerning the only world we have.
Thanks again,
K. Wilson
My Mum’s father was rarely ill and thought anyone who was ill was just being lazy.
It can be difficult to understand something you’ve never experienced. Tony Judt, who died in 2010, was diagnosed with amyotrophic lateral sclerosis three years earlier, which slowly causes paralysis. His illness wasn’t invisible – I’m citing his book, The Memory Chalet because I know someone with MS who is now in a wheelchair. It wasn’t until I read the second chapter, “Night”, that I had any idea what it was like after being put to bed for the night and just how much able-bodied people take for granted.
Review by Peter Preston, who contracted polio as a child: The Memory Chalet by Tony Judt – review
Thanks, Ania 🙂 I was looking for the “like” button for the comment…lord, I spend too much time on Facebook. Anyway, thanks and all my best to you as well.
As a fellow sufferer of PA I can relate somewhat, but out of sheer luck I imagine, I have been spared a lot of the experiences you described. My Psoriasis itself was always visible and that drew attention and maybe acted as a good introduction to me explaining my limp and the fact that my forefinger wouldn’t bend leaving me in a constants ‘E.T. hailing a cab’ pose. I do however relate to having to hear opinions people have for what you should be doing to solve your issue. They are usually expressed in a mixed tone of concern and smug accusation that you haven’t figure it out for yourself.
My philosophy is always to dismiss those who judge without understanding and generally in a very vocal way. Its rare to be presented with the opportunity to point out someones ignorance when its so blatant so sometimes its fun.