I have bipolar disorder, so I’m no stranger to people not understanding me. It’s hard when your moods are iffy to commit to things and that makes me flaky sometimes. I’m used to people not understanding what is wrong with me or that I’m ill because they can’t see it. And arthritis is no different.
On the outside I look normal. I’m not sickly green. I’m not giving off any real indication that something is very wrong. That’s the trouble with some of these autoimmune diseases. We don’t LOOK sick. But we are.
I am sick. Maybe not with the flu or a cold or something that gives off visible warning, but I am. I have an illness that isn’t discernable at first. So when you stare at me in public, I get it. You are wondering if I’m in a wheelchair because I’m fat. Because why else would such a young person be in a wheelchair, but not pushing it herself.
I know that I have put on weight. I know that it makes people uncomfortable to see someone my age being wheeled around by her husband and taking up most of the aisle at the store in an attempt to “help” her husband run errands. I know that I look like I should be able to walk. I’m not THAT overweight really and my legs aren’t shriveled or giving some other visible sign that they don’t work. But they don’t.
It’s not that I don’t see you stare, it’s that I pretend not to so as not to make you feel bad.
But the reality is, many autoimmune diseases are invisible. But the effects of them are not. The medications can make you feel sick. Sometimes people eat to try to make their stomach hurt less. Other medications cause weight gain, and it wouldn’t matter how little you ate. I’m on medications that do both. And I can’t walk enough to combat either with movement. So I put on weight.
You can’t see my illness, but it’s there. It causes my joints to hurt if I move them at all. Most of the time, they hurt even if I’m not moving. It causes fluid to fill the joint cavity making weight bearing or walking so uncomfortable and painful that I can’t fathom ever making it downstairs again, let alone out of the house alone. You can’t see it, but that is what my wheelchair is hiding.
You don’t know this, but the arthritis is in my hands and wrists too. So it often hurts to push my wheelchair. When I do, I can only do it for short periods of time before my hands begin to ache and I can no longer use them at all. That is why I’m young, and otherwise healthy looking, but my husband is pushing me instead of me pushing myself.
I see you staring. I see you sizing me up, looking for signs that I’m not just lazy. I see you judging my situation with only visible clues for you to use to make your snap judgment about who I am.
My weight did not cause my disorder. It’s not as simple as just eating less. It’s not as simple as being more active. My life is not simple and never will be again. Every facet of it has to be modified to accommodate my new disease. And while you don’t know this and can’t tell this from looking, it’s new. My husband and I are still learning how to cope with how to live life in our home. I’m still coping with how to deal with strangers staring.
So while you steal glances out of the corner of your eye and whisper to your friends, remember this: My disease is invisible. You don’t know this, but I have a rare form of arthritis that struck me suddenly and left me debilitated and immobile. I have an autoimmune disease that is attacking my joints and my doctors are working hard to slow it down so that my joints aren’t destroyed forever. I am overweight because I can’t walk, not the other way around. I am sick, you just can’t see it.
I see you stare. Trust me, you aren’t that smooth. But you are passing judgment on someone who would give anything to be the person you have judged her to be, instead of what she is: Young, otherwise healthy, but unable to walk because her body decided to attack itself one day.
I will be “sick” forever. This is my disease. Autoimmune disorders are often invisible, their effects, not so much. So you only have half the story and your eyes can’t be trusted to fill in the rest.