Chronically Ill — and still cute AF!
Chronic illness. Invisible illness. Whatever you prefer to call it, I call it annoying. Not because I have a disease (although having MS is quite exhausting). It’s annoying because clearly I don’t look the part.
I don’t wear an orange “MS” label on my shirt every day. My disease rarely comes up in conversation with new acquaintances. Not everyone needs to know or is entitled to know that I live with a chronic, progressive, (so far) incurable disease. Because my symptoms are mostly considered invisible, it’s not outwardly obvious that I suffer with Multiple Sclerosis.
I still hang out with my friends and family, generally have my hair neatly done, have some mascara on (because I’m a naturally blonde and have invisible lashes), and have a happy disposition. I still drive a manual transition every day, workout regularly, eat pizza and drink whiskey. These aren’t things you’d think someone with a disease would do. Too many people assume that in order to truly be sick, you must look sick.
Individuals who have a chronic or invisible illness are always entitled to their privacy and their opinions. So let me begin by saying that if you disagree with my approach, that’s perfectly ok! From what I’ve been able to gather since my diagnosis, folks who deal with an invisible illness are split pretty evenly down the middle. Many feel like it’s disrespectful for someone to say, “but you don’t look sick…”
As easy as it would be to roll my eyes at such a comment, I rarely take offense to this, even when I’m sick of hearing it so often. First of all, I know I’m cute, so thank you. Second, I’m super strong and only use my illness as a crutch when it’s truly necessary (like during a relapse or exacerbation). Lastly, I prefer to handle the situation with a little bit of humor or sarcasm. If I don’t say respond with an enthusiastic “Thank you!” (typically only when I’m feeling especially generous and calm) you can bet that my response is something along the lines of: “Shocking, I know!” or, “Shit, I must have forgot to put my MS face on this morning.”
These responses are meant to be jarring enough for the other person to recognize what they said is not an appropriate response to learning of my illness, but has just enough humor to keep the conversation from turning ugly. The truth is, so most healthy people have no idea what the appropriate thing to say is. I don’t fault them for that. On the flip side, chronically ill folks typically don’t feel like it’s their job to educate someone else on the proper way to respond. To that end, who’s to say what the proper response is?
For quite some time there’s been this epidemic of tunnel vision. If it doesn’t directly affect you or match with your view, it’s offensive or wrong. Now, I don’t want to go too far down this rabbit hole — it’s deep, dark, and dangerous. I will say that I feel like there’s a need for more compassion, understanding, and education about invisible illness.
What exactly is someone who is chronically ill supposed to look like? Should I have bags under my eyes, unkept hair, and hobble around? Is someone with an invisible illness meant to not wear makeup, smile, iron their clothes, or play sports? For some with a chronic or invisible disease, these small tasks meant to make them fit in with healthy society actually take quite a toll on their health. Some of my friends with MS expend 60% of their daily energy just trying to look the part of being healthy. All so they can go to work, or go back-to-school shopping with their kids with a little pride.
Is it unfair to be judged for not looking like you’re sick or diseased? Probably so. Is it someone else’s fault for not knowing the appropriate response? Also, probably so. But here we are — at a point where so very few are to blame. If you’re one of those individuals who like to keep your illness private, I support you. You should never feel obligated to share that information with anyone who doesn’t need to know. If you happen to be like me and enjoy advocating for yourself, educating people about your disease, and generally see that most people are coming from a place of ignorance or misguided kindness — do your part to help the healthy population understand the unhealthy population.
I genuinely love that I’m able to advocate for people with Multiple Sclerosis. I love that I can encourage those with MS to live their best life and never be ashamed of their illness. I hope there are others like me out there. Others who are proud to say they are “Chronically Ill …and still cute as fuck!” Even if it’s only for a couple of hours before they need to lay down and rest.