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Perceptions of invisible illnesses


Trigger warnings for disordered eating, depression/suicide, ableism

When I was a year old I was diagnosed with asthma. My childhood is filled with memories of hospital visits, waking up unable to breathe, and not being able to do what the other children could do. 

And then there were the comments to just “push through it”, “it’s not as bad as you think it is”. This from people who have never suffocated from their lungs constricting. When I say I can’t breathe, of course I’m getting some air, but talking becomes difficult, we can only convey short sentences as our airways constrict and mucus builds up to eventually cut off you breathing entirely. Those moments are critical, that’s the moment you get your inhaler, you stop, you rest, you let the lightheaded feeling pass because you weren’t getting enough oxygen earlier. 

And I’ll never forget the time my sister told me I was just faking for attention. 

I’m much older now. Thankfully asthma medication has advanced to the point of controlling, I barely get an asthma attack. Unfortunately I watch as my younger sister suffers, and hear her tell me of times my older sister didn’t believe her when she needed to stop on a run because she couldn’t breathe. 

Being someone who has been sick all her life, it never amazes me the presumptions healthy people have about those who are sick. They never experience what it’s like to have their throat constrict and find yourself gasping for air. Or how about sleeping with an asthma attack, having a nightmare and unable to breathe in your own dream, unable to run, and waking to find you need your spray. Somehow they think they can tell us, “just push through it”, “it’s not that bad”, “you’re being lazy”, or my favorite, “you’re just faking”.

Why is it so hard to understand that NO, sometimes we CAN’T and that’s OK because we don’t want to die or cause ourselves harm. 

Now, I mentioned before that my asthma is well controlled, but I was always the unhealthiest of the 3. Mental illness, handicapped knee, surgery for a cyst the size of a grapefruit, severe absesses before a root canal, and my newest affliction, Irritable Bowel Syndrome (IBS).  For a year I went through all the tests to see if it was crohns, celiac, thyroid, whatever. No results, I just have IBS.

IBS is different for many people, the thing to remember is that it’s not a specific disease but a description of symptoms that are not explained by another specific IBD. This means, there is no cure and treatment is based on what works for some people.

In my personal case, the suggested drugs didn’t help, various treatments don’t really do much and the little control I have over it is basically lots of fiber, miralax, and avoiding general trigger foods. I lost my appetite, which is to say, I felt hungry but unable to eat anything. My life became constant pain, bathroom trips, and a lack of energy that goes beyond just basic fatigue, likely from the the malnutrition. 

All while this was going I would get comments in the elevator at work, “You lost weight what did you do?” and once again I’d explain, I’m doing nothing, I got sick. 

Personally, I’m an upfront person. I don’t hold back about illnesses or things like that because it’s been such a constant in my life, that if something suddenly happened to me, I want coworkers and friends to know I have this and to warn medical professionals I’m on medication. Besides, I’m not ashamed of my illness, and frankly having people tell me to smile, or ask why I’m always frowning, it gets tiresome. Better just to explain I’m sick a lot then put up with people insisting I smile because it makes me look pretty. 

And that brings me to the point of this entry. I don’t look sick. I was overweight when the IBS started to ruin my appetite, so as far as I look, I’m a skinny young woman, who can walk and ride a bike to work. For all outward appearances and preconceived notions about what “healthy” is, I appear fine. 

Yeah, I can walk fine, but the fact is that my knee cap is slightly off center and my leg to swells. I get pain, and sometimes even need a cane. Sure I bike ride, because cyclical motion is better for the knee. Furthermore, walking gives me stomach pains, and I don’t mean cramps, I mean something in my gut from the IBS that makes me want to puke. Riding a bike puts me in a sitting a position that doesn’t cause this pain that happens if I’m walking. 

Making assumptions about people’s health based on appearance does nobody good. Furthermore, assuming you know better than the people that suffer is ableist and downright insulting. I can’t tell you how many times I’ve been told if I exercised more I’d feel better, despite explaining the fact that I wake up every morning with no energy, that just even going to a sedentary job everyday drains me dry, so when I come home all I can do is lay in bed. 

I get accused of being lazy. My parents do a hard days work, they’re sore. I sit at a computer, why am I exhausted they wonder? They don’t understand that I started the day with nothing, no energy. So when I get home sometimes it’s all I can do to clean up some dishes and do the laundry. Sometimes I wonder how I even get through the day, my worst days often end up being a blur. 

And then I get looks, and accusations that I’m going to lose my job because I call out sick, or leave early when I’m in so much pain I can’t focus. Or I get comments about how lucky I am for having a union job because anyone else would have fired me. 

And let’s not forget that becoming so ill that you can’t really do anything beyond work and rest, you stop going out. You stop socializing, plagued by worries of “will there be a bathroom” and “do I have the energy to even go out today?”

Depression. Something I have suffered from since I was a teenager, nearly taking my own life by overdose. Now it’s back, and so all that physical pain is compounded by emotional pain and sickness.

I can go out, put on a happy face, do my work, make myself eat a small meal and everything looks ok. But people wonder why I’m lazy why I don’t smile anymore.

I just wonder how I manage to get through every day. 

I share this story not for pity, but for understanding. Not all sick people look sick, and not all sick people need your advice. I’ve been to doctors and therapists, I’m getting all the care I can because I’m lucky enough to have health insurance. 

I have accepted that there may be no cure for IBS, that my struggles will only continue, and I can only hope what modern medicine did for my asthma eventually works for IBS, and for my depression, because believe me I am still gripped by it as I ever was. 

I don’t need advice or encouragement. I don’t need to be told it will get better, because you don’t know that. I don’t need you to encourage me to push through because if I put my mind to it I can do anything. Can’t you understand my mind is sick too? I don’t want any of that.

I just want people to understand.