What they don’t see …

When people see me, the first thing they notice is my wheelchair. Before I lost 140 pounds, I can almost promise you it was my weight or that the weight was a close second.
Sure, they may think they notice my smile or my eyes or my nice hair. But really, they see the chair.
I’m not judging. It’s pretty hard to miss. Not noticing the chair first would make a person pretty non-observant. Being a full-time wheelchair user makes me more than a foot shorter than most people. It means I sit in a chair that looks way different than most chairs … and I take that chair with me. The only time I get offended by this concept is when people make the chair (or my weight) their entire perception of my identity and they focus on it throughout our interactions.
What they don’t know, what they can’t know, is that the chair … or at least what “put me in it” as I’m so often asked … is the least of my health “worries.”

I have multiple invisible illnesses, one of which has yet to be completely figured out. I manage, though. I’ve had it for three years and while some notice (especially when I complain about it on Facebook!), I’m tough. Yes, it does affect me and even wreak havoc on my life some days. But you know what? I cope. At its worst times I was still employed and managed to barely miss work because of it.

The same goes for all my invisible illnesses. They are the reason it takes both hands to count my medications, not the Spina Bifida. They are the reason I’ve had procedure after procedure and have to see specialists.

I’m almost reticent to even discuss these issues because I fear that people will think I’m just complaining. I’m not. I don’t like having the problems, but I rejoice in God’s faithfulness through them. Acknowledging a problem is far from complaining about it.

I also worry people will see this and think I’m not employable. Nothing could be farther from the truth. If I were unemployable because of these problems, I would be on disability. If anything, my dedication to my former job during the hardest times proves I’m a faithful employee.

So why write? Why share? Because I think my story can help someone. This week is National Invisible Illness Week , which is a celebration…no, an acknowledgement of people who live with so-called invisible illnesses. The site I linked above has many articles and resources for people living with some sort of illness that is not necessarily visible to the average person.

People with invisible illness face a unique kind of discrimination. People see them using the electric carts at stores or handicapped parking, and they give them dirty looks. Or worse, they key their car. Yes, I’ve heard of such things.

When people do find out about the illness, especially if it’s rare, they want to ask all kinds of questions about it. That’s the hardest for me, even regarding my disability. Part of me wants to educate people and I also hate it when people have any kind of misconception of any truth.

But you know what? I also don’t think it’s anyone’s business to ask most the questions I get asked. It’s no one’s business why I try not to drink while I eat. It’s none of their business why I make the food choices I do. It’s not the check-out person’s business to comment on how many prescriptions I’m getting. The obvious solution is to tell people it’s none of their business or to simply ask, “why do you want to know?” but trust me, that is never received well. They treat me like I am being the jerk or like I’m being defensive if I don’t answer.

Another major form of discrimination is the “I can’t see it, it can’t be THAT bad” syndrome. I’m blessed because people can see something wrong with me so I don’t face this as much. But what about people with fibromyalgia or sarcoid? I have friends with each auto-immune disorder and they have people, including loved ones, treat them like they are making it up or taking their disease too seriously. People just don’t understand that just because a person can’t see something, doesn’t mean it isn’t there. Or that it can be so detrimental.

Living with an invisible illness is tough, sometimes almost impossible for some on days. But I think as people become more aware and as better treatments become available, that life will become much more livable.

2 comments / Add your comment below

  1. Or congenital heart disease…

    Actually, I’ve known several folks in chairs in my life, so for me now, it’s more like “you have a nose.” To be completely transparent, it’s the voice of the person that will attract/distract me before many of the physical features register, but that’s ’cause I’m so stinkin’ audio-centric.

    I am glad you posted this. It’s not easy to talk about the invisible diseases. It’s something that people want to know and yet at the same time, don’t want to know.

  2. I know you posted this blog weeks ago, but I want to say that I am with you there as far as how we are treated by the “normal” people around us. I don’t mind little kids asking somewhat rude questions because they don’t know any better, but adults should have more courtesy and common sense. Since my illnesses are all “invisible,” I’ve gotten all of the negative responses that you talk about and worse, because sometimes I need a wheelchair and on my best days I get by with a cane. It never seems to get any easier to talk about or deal with. Also, thanks for sharing the IDA site – I had no idea such a resource existed! And best wishes and prayers to you in your own fight.

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