Invisible Illness: The Things You Don’t See


In honor of National Invisible Illness Week coming up, and all who fight the #InvisibleFight, I decided to showcase some aspects of life with invisible chronic illness that many people DON’T get to see, or know about. Now, I’m a “complex case” and a “medical mystery” and an “anomaly” who is “very interesting to physicians” (All these things have been said to me by various doctors throughout the years. The word anomaly is mentioned so frequently, I should change Arthritis Ashley to Anomaly Ashley, actually.) I have over 40 doctor-diagnosed conditions — so many diagnoses, that it’s to the point that I question the accuracy of many of them. My husband thinks I have one primary condition or disorder that is some version of RA or an autoimmune illness that has yet to be discovered. When I was younger, I always wanted to be famous — hey, maybe I’ll have a disease named after me! lol. It can be confusing when I test positive for, well, everything, yet test negative for the things that would make the most sense. It’s a never-ending battle, and a never-ending journey (so interesting and ridiculous, in fact, that I wrote a book about it.) So, some of the below-mentioned things may not be applicable to EVERYONE with rheumatoid arthritis, or celiac disease, or POTS, or sjgorens, and so on, but, this is my experience, and I know that some of you will relate.

Things That May Surprise You …

  • I have walked past people before, say, at a coffee shop or in a store, because I don’t see them. I might just be daydreaming and in “la-la land” (not too far-fetched a notion — I AM a writer, after all,) but, I also may legitimately not see you. Why, you ask? Because I have actual blind spots in my peripheral vision called Bulls’ Eye Maculopathy. It is a degenerative feature of the macula caused by the RA drug Plaquenil. Often, it is reversible when the patient stops the med. I have been off of it for probably 15+ years and my maculopathy has not reversed. Thus: not rudeness, actually a little bit blind. #FunnyButNot
  • Likewise, sometimes if I interrupt you, it is because I get super-excited when I have something I want to contribute to the conversation and because of my always-working-nonstop-writer-brain I fear that if I don’t say it, I’ll forget it, or miss my opportunity to chime in. (My family often talks over me, so it’s kind of “every-man-for-themselves at loud dinners.) That said, I may also not know that you’re not done talking. Why, you ask? I have a little bit of upper-register hearing loss, plus nonstop chronic tinnitus (ringing in the ears) that also affects my hearing. Usually, I’m fine. However, if I’m flaring OR if there is a lot of background noise going on, sometimes, I can’t hear well. Unless I’m looking at you talk, I may think you’ve finished your thought especially if there is other noise surrounding us, and I may jump in — again, seemingly rudely. But … not always the case.
  • I have had my brain cut open. I have had my heart medically stopped. I have been injected with radioactive dye and swallowed a radioactive egg. I have had chemotherapy.
  • I have been made fun of for the way I walk. I have not let that stop me from walking or living my life, freely, proudly, and out in the open.
  • I have cried myself to sleep because of my health problems. I have also laughed my butt off about them!
  • I sometimes require more sleep than the average person. Though ideally I’d LIKE to only sleep 6-8 hours per night, sometimes I literally need 10-12 to function like a normal human being if I’m flaring. When my body flares or is recovering from a flare or a biologic drug, it needs time and rest to recover. There are a lot of things I can’t do like a “normal” person, even if I want to. Sometimes sleep is one of them.
  • Sometimes, I get a medical bill for $5.00. Sometimes, I get a medical bill for $30,000. That is not a typo or an exaggeration.
  • My immune system actually works TOO well. Yes, that sounds counterintuitive, because, well, let’s face it: I’m always sick. But, part of the problem with autoimmune illness is this: my immune system is actually overactive, and attacks healthy cells, healthy tissues, and so on. It sees my healthy normal cells as invaders and turns on itself, destroying joints, intestines, skin, etc. in the process, and causing inflammation to run rampant throughout my body. (which equals pain and fatigue and sickness.) Because it is so busy “fighting” the good stuff, it sometimes tires itself out and leaves itself that much more vulnerable to the bad stuff. Plus, some of my medications actually purposefully lower the immune system, dampening it a bit so that it ISN’T working as hard. The downside to this is that while it is a positive that it isn’t attacking my own body as much, it also isn’t attacking the actual bad, foreign invaders (germs, viruses, bad bacteria, and so forth) like it is supposed to.
  • Sometimes, I get red because I am embarrassed or excited or sweaty or hot. Sometimes, I get red due to inflammation in my body, from a lupus flare, from a flare-up of hormone-induced acute intermittent porphyria, because of an allergic reaction to food or chemicals or something in the environment, or from skin involvement from RA. While it is sometimes a pretty, healthy glow (“you look great with some color!”) it sometimes is a sign of illness or disease activity.

The thing that you REALLY don’t see is this: the internal struggle. It is a daily battle every day to live with these kinds of conditions. It’s not a life  I’d wish upon anyone but then again I’d never, ever, in a million years trade my life for anyone else’s. I love my life so much, am so very grateful, and so very blessed. While I hate being sick and I get bummed out about it, and wish that I wasn’t, I also know that my illnesses don’t define me, or make me less valuable as a person.

All I will say is this: be patient with and kind to others. After all, some of these things may have surprised you. And there may be other people around you whose stories you know nothing about. People who may not look sick but battle their own issues day in and day out. People who seem to be perfect and have it all together but who are far from it. Everyone has problems — always remember that.

Lastly, I’ll leave you with this quote that I thought was wonderful:

“Just because you had every right to feel sorry for yourself didn’t mean you ever took the opportunity to do so. In fact, sometimes I was sure that the reason people stared at you with your crutches and wheelchair had nothing to do with your disabilities, and everything to do with the fact that you had abilities they only dreamed of.” – Jodi Picoult, ‘Handle with Care’

#iiwk2015 #iiwk15 #invisibleillness #invisiblefight

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