National Invisible Chronic Illness Awareness Week

Statistics show that nearly 1 in 2 people in the USA have a chronic condition and 96% of it is invisible.

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is "But you look so good!"

"Although telling someone they look good is often seen as a compliment," says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week "it feels like an invalidation of the physical pain or seriousness of one's illness and the suffering they cope with daily."

Carmen Leal, creator of SomeOne Cares Christian Caregiver Conference and author of The Twenty-Third Psalm for Caregivers says, "When someone appears physically normal people are less likely to show understanding and compassion. National Invisible Chronic Illness Awareness Week is an important opportunity to help families, businesses, churches, and communities understand that conditions without an outward sign are just as debilitating as other more visible illnesses and disabilities."

Copen, 38, who has lived with rheumatoid arthritis and fibromyalgia for fifteen years agrees. "We know that 75% of marriages impacted by illness end in divorce and 70% of suicides have uncontrollable physical pain as a factor."

 

I’m always pleased to hear that I look good, but it is incredibly annoying when people conclude that I cannot have any sort of disability because I "look healthy". You can’t tell by looking at someone whether they have asthma, a heart condition, AIDS, a neurological or degenerative disease; even an MD needs to do tests rather than relying on just his eyes! A friend’s "healthy" chubby cheeks are actually a side effect of the medication for the illness that’s killing her.

Even if a person is in a wheelchair, you usually can’t tell if they need to be in it 24/7, or if they use it only when they go out and need to walk more than a very short distance. On the other hand, you also can’t tell simply by looking the immense willpower it takes for me to stand on my own two feet instead of using mobility aids; it’s a matter of pride for me to do without those obvious signals of disability, even now that doctors are asking incredulously "how on earth you walk on what’s left of that knee?!" I functioned for 10 years,even lifting heavy boxes, with 3 fractured vertebrae that no one knew about because no one did any x-rays; supposedly I wouldn’t have been able to do what I was doing with a fractured spine, yet there are people who will testify that I did it, and the x-rays testify to the reality of the fractures.

About 15 years ago, I went Christmas shopping with a friend who has lupus, and thus has permanent disability license plates on her car. She’s been my guide since the day I was diagnosed to successfully living with a chronic invisible illness, an approach that requires equal parts rest, public education, and humor. We parked in a crip space, and were immediately chastised by someone who assumed the two pretty young girls had borrowed grandma’s car and were just too lazy to park further away.

We tag-teamed our critic with lectures on invisible disabilities – my friend keeps a supply of lupus brochures in her car for just such educational opportunities, and when she stopped to take a breath, I had a few things to say about my own health problems, which are invisible until they get too severe for me to successfully hide, and then become as painfully obvious to onlookers as they are painful to me.

We challenged the busybody to sit in yonder outdoor café for a while, and when we came out of the store, then tell us whether we were illegally parked in the crip space. I have no idea whether she did or not – I hope she did, because it would have been quite an eye-opener for her!

Neither of us had energy to spare that day, so each of us went only to the part of the store where we planned to buy our gifts; I didn’t go into the mens and boys departments with her, and she didn’t come into gifts and accessories with me. We were in the store less than half an hour. When we came out, one of us was leaning on the shopping cart for support and the other was limping badly (and wishing I’d thought to get a cart to lean on myself).

It took the combined efforts of both of us to lift her bag with a few sweaters and shirts into the trunk, where it would stay until her husband lifted it out. We determined that if we put my bag in the trunk, we weren’t going to get it back out on our own, so it sat on my lap in the car. Even though we were only a block and a half from my apartment, she had to drive me home ... I wasn’t going to make it under my own power. After sitting in the car for another 15-20 minutes, I finally managed to walk the 15 yards from the car to the couch, where I collapsed for several hours before making it the next 15-20 feet to the bed for the rest of the day.

No one seeing us at the point we dragged out of the store would have had any doubt that we were legally parked in that crip space, because we were both barely able to walk. Yes, we reached the point of exhaustion that quickly – a lack of stamina that was not readily apparent when we arrived, well-rested.

If you suspect that someone is using a crip space that they’re not entitled to, please do speak up, but do it politely! We do appreciate people helping to reserve those parking spaces for those who are legally entitled, but, given that most disabilities are invisible, we don’t appreciate the in-your-face attitude of the snarky folks who demand "what’s your disability, are you too stupid to read the signs?" simply because they don’t see a wheelchair. Or you may, like our critic, wind up getting an unwanted educational lecture on the nature of our invisible disabilities and a pile of reading material on the subject.

Just because you can’t see it doesn’t mean it’s not severely limiting. You see what I’m able to do in the short time that I’m out and about; you don’t see the after-effects. You don’t see the re-scheduling as the errand originally planned for Monday gets pushed off again and again until Saturday waiting for a day I feel up to going out for an hour.

At one point, while I was still working, I invited my friend with lupus and her husband to Easter dinner after they performed at church. Immediately after the main course, she collapsed on the couch and I collapsed on the love seat. Our husbands had to serve us our coffee and cake in the living room, and do all the post-dinner clean up because we were both too exhausted to even sit up. But because that happened inside my apartment, the only people who knew about it were our husbands, who were already aware of what happens when we overdo. To the outside world, we looked healthy.

I am one of the 75% whose marriage deteriorated as my health did. No opportunity was wasted to remind me that he "didn’t get married to have to cook and clean". Yeah, well, it was no picnic for me, either, to leave work at 5 PM so exhausted that I didn’t know how I was going to get home, and practically crawl in the door to be greeted by the petulant demand "what’s for dinner?" I certainly didn’t ask to become extremely limited due to post-viral Chronic Fatigue Syndrome, or the constant pain of fibromyalgia (on top of the arthritis, which has now spread from the post-traumatic knee injury when I was 17 to most of my joints). And, no, doctors, the asthma is not a result of deconditioning ... when I was dancing several hours every day, I also had it, though I admit it triggers a little more easily now.

I have no choice but to play the hand life dealt me – he decided to throw his cards on the table and move on to the next game where he had better odds of getting what he wanted. Which was actually fine with me – at my worst, when I often did without dinner because by 4 PM I had run out of energy to even throw together a sandwich, at least I was spared the nagging to fix his dinner, or that opening a can of soup wasn’t the "good dinner" he wanted to be served. Pushing myself to meet his expectations of what I "should" be able to do, because I "don’t look sick" almost certainly would have landed me in the hospital; on my own, I had only myself to answer to, and I didn’t scold myself for relying on cereal bars and PopTarts at those times that conserving energy so I wasn’t making myself sicker was more important than worrying about perfect nutrition.

I learned the hard way that I cannot be concerned about what anyone else thinks I "should" do; they don’t live in my body, they don’t pay the price when their expectation is more than I can manage without relapsing. If you think my house should be cleaner, you’re perfectly welcome to come over and clean it – preserving my health is more important than exhausting myself by keeping the house as spotless as I like it. If you think I should be eating more fresh fruit and vegetables, I’ll gladly accept whatever you want to pick up at the farmers market for me, so that I don’t have to exhaust myself going over there twice a week (and my bad wrist would appreciate it if you’d peel and slice it before you drop it off).

 

 

This is National Chronic Invisible Illness week. September is Chronic Pain Awareness Month, and October is Disability Awareness Month. Time to write letters to the editor and your local media and make them aware of the large numbers of people suffering who fly beneath the radar because they’re too disabled to go to protest marches.