Tuesday, April 9, 2013

An Invisible Illness? But You Look So Good!

Yep...that's thing about an invisible or hidden illness, you can't tell by looking at someone if they are dealing with a chronic condition.

I've been seeing a lot recently about invisible or hidden illness. I know friends and family who suffer from illnesses like these and have often thought how frustrating it can be to deal with. Some conditions you might see listed as invisible or hidden disabilities are: asthma, Sjogren's syndrome, Lupus, chronic pain, migraines, diabetes, fibromyalgia, extreme fatigue, dizziness/vertigo, sleep disorders, PTSD, mental illness, depression, and the list goes on. It is estimated that 96 percent of people with a chronic medical condition, live with an invisible illness.

One of the most frustrating things about this is that the person suffering may "appear to be fine," but they are indeed suffering and sometimes told (even by physicians and specialists) they are faking or imagining their symptoms. The symptoms they battle are not obvious to those around them. They can also be hard for physicians to sometimes associate with a particular illness or condition. It can be incredibly frustrating. I found a very interesting blog that provides information, resources, and a place to post personal stories - it is called "But You Don't Look Sick," and it is worth reading whether you have an invisible illness or know/love someone who does. From one of the posts, "I was diagnosed with Lupus over 10 years ago.  In those 10 years I have learned the tricks of the trade:  smile often, speak vaguely and cry alone." There is also an interesting look at the meaning of Thanksgiving - "Sick Humor" The ABCs of Spoonie Thanks. Here's the explanation of the a "spoonie" or the spoon theory.

I started thinking about the issue recently and challenges of an invisible illness when I my 6th had ear surgery to replace the "hammer" bone. This is a tympanoplasty without stapidectomy, to be specific. This was my 6th surgery in 20 years on my left ear. The first surgery was in October 1993 and the most recent in March this year. It's interesting how the process and recovery have changed. One thing that hasn't changed, is dealing with the partial hearing loss and vertigo and the fact that neither are obvious (unless, of course, the vertigo causes me to fall flat) but both are very frustrating and significantly impact my daily life. My particular hearing impairment is caused from having many ear infections as a child. Eventually, the effect of that was impacting too much and I started seeing doctors to find the solution. I saw three doctors before I had my first surgery and was very lucky to happen upon one of the leading otolaryngologists in the country, Dr. C. Gary Jackson. When I moved to St Louis, I also was very lucky to happen upon one of the Best Doctors in America (2012) in Dr. James E. Beneke.

With my situation, my hearing loss is in my left ear only. My right ear is great. Given the loss in one ear, I have a lot of trouble with knowing where sounds or voices are coming from. For instance, when I am driving and hear a siren, I don't know if the vehicle is coming behind me, toward me, from the right, or from the left. Until it is close enough for me to see, I am not sure where it is. A little lighter example is trying to track down a dying smoke detector. For several weeks I heard a periodic "beep" in my house. I heard it most at night when it was really quiet and easier to hear. Of course, at that point, it drove me crazy and I couldn't sleep. I knew it sounded like a smoke detector with a bad battery, but I could not find it. If I thought it was coming from one direction, I would go there and only to find it sounded like it was across the room. I searched every room on the main floor and in the basement until I just gave up. My sister was a little more persistent, thank goodness. She could hear it even when I couldn't and it was driving her crazy, too. She set out to find it and did...in a basement closet under a few things left by the previous homeowner. It was incredibly annoying, but what was I going to do? Thank goodness she tracked it down. By that time, I really wanted to take a hammer to it, but I think I just dropped it in the dumpster instead.

Professionally, I have a lot of trouble in conferences, meetings, auditoriums, and convention halls. When people are gathered in these situations, there is so much background noise and echo that I can sometimes barely understand when speaking face-to-face with someone. Anyone with a hearing loss can relate to this; I get tired of (and feel bad about) asking people to repeat themselves, so I get as much as possible with what I hear and crude lipreading. I miss a lot of conversations and hate to think that someone believes I'm bored, uninterested, or just not listening to them when they speak. I nod my head and hope I'm agreeing or disagreeing appropriately. I was also surprised to hear someone tell me once that, until they sat and talked with me one-on-one, they thought I was standoffish. They were kind of surprised to find I was just the opposite. That's the impression people sometimes get when I'm in a situation where I can't hear well enough to participate in a conversation, but they have no idea that is why I'm not participating. I had a friend ask me once why I never ate popcorn in the movie theater. I had to explain to her that any kind of head-noise, like chewing popcorn, was too loud and I had trouble hearing the movie.

Vertigo and dizziness is a completely different issue. I've found myself in the middle of a software demonstration in class and, out of nowhere, the room would spin. It's like my own little carnival ride in my head. It sounds fun - carnival and all - but it is not and rarely happens at a convenient time. It's hard to explain that it is hard to stand up or walk when it hits; it really sounds like a nice excuse to take it easy for a day.

The saying "never judge a man until you've walked a mile in his shoes" is very appropriate for invisible illnesses. It may seem like an illness or symptoms of a condition can't be as severe as a person describes; but especially in these cases, you can't claim to know until you've experienced it for yourself.


  1. Thank you Andrea for your very brave post!

  2. As the mother of a child with an 'invisible' illness, I really appreciate this post!! Thank you!!