Invisible Illness Awareness Week

Did you know it’s Invisible Illness Awareness Week? I didn’t either. I stumbled across this yesterday while I was doing research to get ready to meet with school about my daughter’s migraines and it caused me to pause. While we often say that Rosie has a chronic health condition, in all honesty, it really is an invisible illness. Unless she has a full-blown migraine, you can’t see that she may be silently suffering. And, since she gets good grades, dances and is fairly social, it’s hard to believe that she has something wrong with her, but she does. 

We made a huge mistake when we discovered that Rosie’s tummy issues were really migraines- we tried to make her life as normal as possible. While that sounds great in theory, it wasn’t until last year when we started to openly discuss with school and friends that she had migraines that we really started to take control of the diagnosis. Calling in “sick” to school, saying she just had a “headache” didn’t really help her. Being honest and saying, “I have chronic migraines” did. And, here’s why.

Lots of kids in middle school claim to have headaches to get out of class. Know why? It’s something you can’t really see, just like a stomachache. And, as my teenager will tell you, she’s probably heard over half of her friends claim to have had a migraine and that really bothers her because many of them have no idea how painful and debilitating a migraine can really be. I am lucky that I don’t suffer from them but I’ve lived with them my entire life- my mother, husband and child all suffer from this invisible illness. However, I have my own- asthma that’s so serious that it requires a $45,000 a year medication so I can relate to the frustration when others don’t clearly understand. 

When you look normal on the outside and even pretend to be sometimes, people tend to forget that you really have a chronic illness (and as I can attest, this is fun. I love to play tennis and feel “normal” as much as possible). But, when you have an invisible illness, YOU can never forget. Managing illness isn’t easy. There’s lots of doctors, medications and alternative treatments that have to all come together to keep a chronic illness in check. And, there are lots of days when we can’t get her to school. For a teenager, this is sometimes overwhelming- even more overwhelming than the lack of sympathy that she gets from some of the kids and teachers at school. 

Just yesterday, I was explaining to the school psychologist that it took us a long time to really start talking about Rosie’s migraines so she could have a normal middle school experience. Her response shocked me. “Well, don’t you think everyone figured it out? They all know something’s wrong….”

Her response was so matter-of-fact that it startled me but what really got me was her lack of understanding on why my child would want to stay on the drill team. In fact, she brought it up numerous times in a meeting that was scheduled to discuss starting the 504 plan process (which to me had very little to do with drill team. I really was more concerned about core classes). I did my best to convey to her that my child’s identity is tied to dance and that she really wants to stay part of the team. Yes, it’s not the most convenient thing for school when she misses or us to try and get her there because it’s first hour, but she really wants to do it. And, guess what? The school owes her the same chance to be on that team as a child that’s not chronically ill.  ( As an aside, We’ve been blessed that our dance studio understands Rosie’s illness and gives us grace with classes. We weren’t able to be there at all last week and I still find myself apologizing. They won’t let me. I wish the rest of the world operated this way.)

At the end of yesterday’s meeting, I said “when you see my child, you won’t believe we’re talking about the same kid. She’s smart, talented, beautiful. And, she deserves the chance to get the same kind of grades that she did before we got this diagnosis.”

I guess in a nutshell, I summed up exactly what it means to function in today’s society with an invisible illness. It’s a struggle and sometimes a fight. Not only to manage the disease but to be as normal as possible while doing so. Rosie’s life isn’t like other kids her age, but she deserves the same chances at success that healthy kids do. And, it’s my job as her mom, to help her get that chance. And, so does everybody with an invisible illness. 

The campaign for this year’s Invisible Illness Awareness week is Just One but there are over 100 million Americans that have an invisible illness. No one should ever feel alone, because they’re not. If you have an invisible illness, how do you deal with your feelings that you’re alone?