On invisible illnesses and being judged

I saw something on Facebook earlier this week that really rubbed me the wrong way.  It was a picture of a wheelchair user standing to get something off a shelf in a store.  The caption was something like, “There has been a miracle in aisle 5.”  The obvious implication was that the woman didn’t really need the wheelchair.

The overwhelming majority of people with chronic illness have no obvious external signs noticeable by the casual observer.  This is why they’re called “invisible.”  This causes people to generally assume that the people around them are healthy and able-bodied.  It’s frustrating because chronic illness is so prevalent, but that’s the reality.  So let’s look at how this affects my life.
If I am dressed and my arms are fully covered, I look completely normal.  When I tell people that I am sick, the first thing they say is always, “If you hadn’t told me, I would never have known.”  I believe it.  I have always been very active so even on days when I feel miserable, it’s not unusual for me to walk a couple of miles.  This contributes to the perception that I am healthy, or at the very least not as sick I say I am.
I got into a nasty repeat anaphylaxis crisis in May.  I spent a week largely in bed.  I was also having POTSy problems with my blood pressure and heart rate being poorly regulated.  When my doctor came by to see me, he warned me that I had to be very careful about my physical activity level or I would end up in a situation where I would faint every time I stood up.  For the first week, I could only stand for 10 minutes.  I increased this by 10 minutes every week until I got to an hour, after which time I could resume normal activity. 
Do you know how difficult it to not stand for more than 10 minutes a day?  You use that time just walking to and from the bathroom.  It was so disruptive and obnoxious. 
You know what I kind of wished I had during that six week period?  A wheelchair.  (And accessible housing, etc, but just go with me here.) It would have enabled me to move around my apartment while being safe.
There is this idea that people who have a disability lose 100% of the related ability.  I first realized this when I lost my hearing.  A lot of hearing (culturally hearing) people had no idea that deafness is a spectrum.  Profound deafness, in which there is no hearing at all, is rare.  Blindness is the same way.  Mobility as well.  A lot of people who use mobility aids still have some ability to stand or use their legs.  If I had used a wheelchair for those weeks, it would have had nothing to do with the function of my legs. 
It’s also important to realize that when you are chronically ill, you are forever getting instructions from doctors on what you can’t do.  I am a very compliant patient.  I don’t always agree with a plan, but once we have one that I am comfortable with, I adhere to it.  That said, in that first week when I needed to get the charger for my computer in the other room and my ten minutes a day were used up, I did not drag myself along the floor on my belly.  I stood up, walked to the other room and got it. 
Living with chronic illness is about mitigating risk.  But for those of us who live with it, it’s sometimes worth it to just do something we’re not supposed to.  Spending extra time and energy exercising alternative options can be detrimental if we don’t have much time or energy left.  How much of a pain in the ass something is going to be can be an influencing factor.  I deal with this mostly with my hearing.  Sometimes using a video phone is cumbersome.  I can understand ASL pretty well, but it means I have to really focus.  If I’m tired, I’m probably going to just have a phone conversation and ask the other person to repeat things if I don’t hear it the first time.  Conversely, lip reading sometimes gives me a serious headache.  On those days, if you’re not signing and it’s too loud for me to hear you, I’ll catch up with you tomorrow.
And some days, I just don’t give a fuck.  On those days, I walk around my neighborhood with my headphones on, sit in direct sunlight and eat chicken parm subs.  I suffer for it, but that’s my choice.  I am allowed to choose to do things that are bad for me.  Like standing up for four seconds to grab something off a shelf when I am using a wheelchair.
A lot of chronically ill people make decisions based on how much attention they will have to deal with.  People staring at me has never bothered me, but that’s not true for everyone.  I don’t feel the need to cover my PICC line most of the time, but it guarantees people will stare at me and speculate. 
I had a lot of problems with my right leg after I broke my back as a teenager.  I had a handicapped placard for a few years in my late teens/early 20’s because I walked with a crutch and my leg always hurt a lot.  Sometimes I would pull into a handicapped parking spot, get out of my car without my crutch and limp into a store to get something quickly.  Often, people would feel the need to tell me that the parking spot was for people who were really disabled.
When people make assumptions like that about me, I have two options: educate them, or walk away.  But there’s an inherent problem with being forced to educate people in this situation – it eliminates my right to privacy.  I don’t generally mind telling people about my health issues, but I mind BEING MADE to do it, if I otherwise wouldn’t.  I share things about my life because I choose to.  If I didn’t, no one would have a right to know these things about me.
Let’s say I am borderline anaphylaxing and any unnecessary movement could push it over the edge.  Now let’s say I’m also sitting down on the train and refuse to give up my seat to someone who is pregnant.  People would immediately judge me as being lazy and rude.  Why should I then have to tell complete strangers the reason I need to sit?  When they’re unlikely to believe me anyway?
I do not have to explain my choices.  I have a right not to be judged because my illness isn’t written on my skin for everyone to see.  I’m getting really tired of people like me being mocked in internet memes.  If you think this is funny, pay me a visit.  I will clear all the medical supplies, IV bags, syringes and pills off of a chair so you can sit and talk with me about it. 
This is my life.  It is not a joke.  I am not a joke.

7 Responses

  1. cheragain June 18, 2014 / 3:58 pm

    You are most definitely not a joke. You are amazing Lisa!

  2. Rob Manley June 18, 2014 / 6:49 pm

    I have Lupus and I do not look physically sick and I deal with this stuff all the time thanks for writing this

  3. Sandy June 18, 2014 / 7:40 pm

    None of this is a joke, not you, not masto, not any chronic illness. And… I am so tired of the labeling and the assumptions made by people who have no idea what my daily life is like. I would much rather have them ask me than make a false assessment! Thank you for speaking out on this very thing!



  4. Sam_P June 19, 2014 / 10:26 pm

    I don’t know you Lisa Klimas but I’ve read a couple of your posts in fb groups. You have an admirable way with words. Again, well said.

  5. Pam H. June 19, 2015 / 7:12 pm

    I was the butt of many jokes because my illness. It has caused a lot of hurt and loss of trust. It is truly sad that we must deal with our illness day in and day out coupled with the rude remarks made from people. Apparently compassion is something that must be taught. Today at the hospital a little girl asked what was wrong with me because I was wearing a mask. Her parents were thoroughly embarrassed by her asking them this question, but I was not upset or even the least bit angry because she just wanted to know. She was curious and this was a great opportunity to teach her. I told them not to worry that the question was okay, I explained to her that I was allergic to perfumes and they made me sick and have to go to the hospital. She was satisfied with the answer and I was happy to give it, but the parents were still apologizing for her question. I hope it was a moment for her to learn compassion. I would honestly people ask me than to make assumptions! Good blog Lisa!

  6. Von June 20, 2015 / 8:53 pm

    Yes more compassion in the world would be a great thing. In my search for a diagnosis I thought for a time I had masto so I understand your difficulties. These days I have the advantage of being old and find that I don’t suffer the discrimination younger people do with regard to disabilities. Some people seem to see themselves as the disability police, monitoring and noting the activities of others, judging and making assumptions. Very disabilist! Keep going the more we speak out the better.

  7. Mark June 27, 2015 / 8:32 am

    Most heartbreaking. I fear it’s even worse then you compellingly lay out. If only the problems stemmed solely from ignorance. Many people, including doctors and other medial professionals, are well aware of our suffering, and react with hostility. Not because of anything we’ve done wrong. As though they feel entitled not to be confronted by suffering. And are infuriated we aren’t entirely holed up, haven’t offed ourselves. To spare them the hassle of dealing with impaired people. Hence, this http://www.healthline.com/health/allergies/severe-reactions-conceal-epinephrine-shot
    Why should we be seeking, in the throes of anaphylaxis, perhaps racing/fighting for our very survival, to conceal vital medical treatment as instructed by our expert doctors? Mighty cruel.

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