Do you know anyone with an invisible illness?
I'm fairly certain you do...
Not all disease is apparent to the naked eye. Some are, of course, and they've got their own stigma because of it, but people who are faced with an "invisible illness" have their own separate issues to face. The first kind is what
National Invisible Chronic Illness Awareness Week is all about. This week was a
push to raise awareness and as an effort to show folks suffering from these illnesses
that other people are out there who "get it." The fact is,
96% of illness is invisible (according to the Census bureau), and
nearly 1 in 2 people live with a chronic illness.
Astounding!
Note: I'm a bit late - we were asked to post this on the 8th, since the awareness week ends tomorrow. I'm sorry. Please see the sites anyway and get info and whatever else you can take away!
Are you the 1 in 2?
If not, take a look to the right or the left on your family tree or sitting on the bus next to you, and odds are you'll find the 1 in 2.
Let's talk about what invisible illnesses are. Any illness that doesn't speak for itself when someone takes a look at you is invisible. So: diabetes (all types), high blood pressure, addictions, PCOS, depression, heart disease, anxiety, cancer, AIDS, asthma, arthritis, lupus... you get the point, I think. Sadly, the list goes on and on and on.
Speaking of lists:
Bernie Mac was the picture of health in most of our eyes... that is, until he passed away from complications from pneumonia, probably related to his ongoing struggle with sarcoidosis, an invisible illness. No one was laughing when another funny man dropped dead and stunned the world; John Ritter didn't even know he had a defect in his heart, 
that's how invisible that problem was. Brooke Shields and Marie Osmond have spoken bravely about their problems with postpartum depression. Princess Diana apparently struggled with depression and eating disorders. Heath Ledger died of an accidental overdose of his insomnia medicine; he also suffered from depression and addiction. Pete Wentz has shared that he 
his bipolar disorder, as do/did Adam Ant, Beethoven, Tim Burton, Lord Byron, Carrie Fisher, Larry Flynt, Macy Gray, Peter Gabriel, Connie Francis, Ralph Waldo Emerson, DMX, Robert Downey, Jr, Charles Dickens, Winston Churchill, Richard Dreyfus, and, I suspect, Britney Spears. Jim Carrey has
fought depression and so has J.K. Rowling. Bob Marley is riding high on the big stage in the sky after a fatal case of melanoma. The following women are breast cancer survi
vors: Edie Falco, Chritina Applegate, Olivia Newton John (who has also fought depression), Shaft's Richard Roundtree (yes, men get breast cancer), Suzanne Somers, Shirley Temple Black, Cheryl Crow. Men who are survivors of protate cancer include Robert de Niro, Joe Torre, Nelson Mandela, Colin Powell, and Rudy Giuliani. Thyroids can go wonky and/or become cancerous - just ask Oprah, Rod Stewart, 
Roger Ebert, Catherine Bell, Kelly Osbourne, Kim Catrall, former President George Bush and his wife
Martha, Gail Devers and Linda Ronstadt. Ronald Regan had cancer twice and then Alz-h
eimer's Disease - all of which are invisible illnesses. Lance Armstrong was given a 2% chance to survive his testicular cancer - but we know how well that turned out, thank goodness. Hepatitis: Naomi Judd, Pamela Anderson Lee, Larry Hagman, Mickey Mantle, Ken Kesey. Lupus: Seal. Eating disorders: Carrie Otis, Catherine Bell, gymnast Cathy Rigby, Courtney Thorne-Smith, Britney Spears, Alanis Morisette, Amy Winehouse (who is also a cutter and addict), Kate Beckinsale, Portia di Rossi and many, many more. You see... some of these you might never have guessed. INVISIBLE.
My story
Why do I care about
Invisible Chronic Illness Week? Well, shouldn't we all? I can name someone in my real life - as opposed to celebrities - with almost all of the disease mentioned above, and then some. But I'm not outing any of them here. I'll out myself, instead.
I have an ongoing battle with two invisible illnesses: fibromyalgia and depression. Oh, and I also firmly believe I had some learning disabilities, too, but I'm kinda past them at this point. It can be debated that my two chronic illnesses are related. Which came first, the chicken or the egg? In fact, I suspect they are unrelated at all, at least in their origin. I have no idea for sure, nor do I care. What I care about is having as healthy a day as possible, each and every day.
Most of you have heard of depression, but many of you may not have heard about fibro - or maybe you've gotten some bad information. Let me sum it up as concisely as I can, though I'm bad at concise (maybe my other invisible illness is Talks Too Much-itis?).
Fibromyalgia
What we know:
- Fibromyalgia is a syndrome, which means it's a collection of symptoms that often appear together, but aren't all necessary to have a diagnosis.
- It's chronic, which means it will run a long-term course. It may go away, or be in "remission" but it will probably come back. Or maybe not.
- It's not degenerative, which means that it's not going to kill me, nor will it destroy my bones, joints, or tissues.
With fibro, some pains come and go. What hurts today may be forgotten in the haze of tomorrow's pain.- Because it's not destructive to the cells in the body, it's not
officially considered a "disease" but I think most people shrug off
disorders that aren't classified as diseases, so I use the term anyway.
- It's not "in your head"; it's not caused by being overly sensitive, neurotic, or hyprochondraic. It's a real disorder with real life consequences for people who have it. And for those that live with us!
- Fibromyalgics feel pain longer than other people and stronger than other people. In tests, a "normal" is poked with a pin and a "fibromite" is poked with a pin. The "normal" moves on from the pain much faster than the person with fibro, and also rates the pain as less intense. The fibromite may still feel significant pain in the site the next day!
What we think we know:
- Fibromyalgia may be an autoimmune disorder (like lupus, scleroderma, and possibly MS).
- Fibromyalgia seems to impact the central nervous system (CNS), specifically pain receptors/nerves.
- It ebbs and flows and seems to respond negatively to stress.
- We think new medicines may be making some sufferers feel better - but not others.
It's related to sleep. Or maybe it's not. It's another case of chicken or the egg, I'm afraid. Do we sleep poorly because of the pain? Or are we in pain because we don't sleep soundly? Whichever it is, it's a fact that most fibromyalgics have disturbed sleep.
What I know for sure:
Every day, I wake up in pain. Have you ever been to the doctor or a hospital and been given that pain assessment chart? You know the one: rate your pain on a scale of 1 (low) to 10 (high) or circle the asinine smiley face that represents your pain level. Well, when asked, I'm usually ripping into an 8 or so at any given time. Other times it gets bad.
Am I wimpy? I don't think so. I have had some more serious pain situations in the past and I think I've handled them fairly well. I feel like my good days have me as a match to many other women my age. I consider myself to be quite tough, and so do many people I know. If you want to know a secret: I think I'm tougher than most people, because of the pain I put up with constantly. But shhh... don't tell anyone that. Let them think they're the strong ones! ;)
I'm a lucky fibromite, actually. I have a lot of pain, but none of the chemical sensitivities that many other sufferers deal with. I know women who can be floored by a week of migraines from sniffing the wrong cleaning product while they grocery shopped. THAT SUCKS. My joints hurt, but I don't have trouble with my joints hurting so badly I need a cane or a wheelchair; some sufferers do. I'm not stuck in bed because the alternative is too unbearably painful or exhausting, though some people feel that's all they can accomplish each day.
I have, however, had my days where taking a shower was the most activity I could muster. Those days, I have needed a nap to recover from the bathing before I could go make a sandwhich - which would then prompt another nap. I have had days where lifting a magazine was too much, which was just as well because my brain just couldn't comprehend the deep thoughts in
People, anyway.
Did I mention that cogntive problems are part of fibromyalgia? I probably forgot. (that's a fibro joke - get it? cognitive problems... forgetfullness.... HA!) In fact,
Fibro Frog, the name of my blog, came from a discussion with another fibromite when we were discussing the typical symptom of "brain fog" or "fibro fog". She mistyped it, and Fibro Frog was born. Now, when I have one of those ditzy times, or moments when I have aphasia (can't remember a word), I think "ribbit!" and it makes me feel just a bit better.
Also common are muscle weakness, sleep disturbances, and clumsiness. Check, check, and check! It's really easy to tell when I'm getting "a flare" because I start dropping things or knocking them over (more than usual). And then I start napping fiercely.
So that's just a little rundown of one invisible illness. My hope is that this post makes someone feel a little more like someone "gets" them. If you want, send me an email or post a comment and share your story. Meanwhile, I need to go try to get some sleep!
What you can do
I don't speak for everyone with a chronic illness, but I have heard others say this so I'm confident I'm not the only one thinking it. The best things you can do for people with invisible chronic illnesses is listen and be patient. You can listen when they need to vent or share fears, or listen to them tell you they
don't want to talk about it. Both are helpful. You can listen when someone says "no" to another bite of cake or going out for drinks because you don't know the reason they declined and you could cause serious problems by "pushing". You can listen when someone asks you not to baby or coddle them, but you can also listen for a cry for help! You can be patient with the friend who cancels at the last minute - even if you don't know of any health problems, they may be there. You can be patient with a person who walks slower than you do - you never know why that is (though he may just be a slow walker!). You don't have to be a doormat, and you shouldn't let people harm themselves or others. But in most cases, just try to be patient and give people the space to be sick and the time to get healthier. Listen. Be patient. And
thank you!
I don't want to preach, but I have noticed some things that sick people
need to think about. If you don't want to read them, skip 'em.
- Try not to take things out on other people, and try to be as positive as you can. Those are my rules. Am I always successful? No. But the better I am at those two things, the happier my family and friends (and coworkers, and customers) are. And frankly, following these two rules make me feel happier, too.
It's also super important to listen to other people - you want them to listen to you, right? Well, when the doctor told me not to crawl into bed for days on end when I was feeling sick, I didn't want to listen. Finally, I took a walk. Then another one. Then a longer one. Within days I was feeling much better. Sitting on the couch and laying around in bed make my fibro worse. Maybe you're different, or maybe you're not. Just try to listen to people who have gone through what you're going through and try to really take in their suggestions. (I still have recommendations I'm actively ignoring, so I'm not standing on a pedestal shaking my finger at you - trust me!)- Say thank you. To the person you canceled on, to the person who lifted your bag, to the doctor who did that extra test she didn't want to do, to the store that delivered, to the person who backed off when you asked him to.
Be grateful for the things you can do. Maybe you can't walk around the block today, but you sat and knitted for 20 minutes and it made you happy. Say "thank you" to the universe. You enjoyed dinner! You snuggled your kitty. You walked through the garden. You ran a marathon. Be grateful!- Talk or write or pray if you need to. Or don't.
- Please try not to make it about you all of the time. It gets old. Can you whine? Ye
s - to the appropriate people, at the appropriate times, and for an appropriate amount of time. Seeing glazed eyes? People not returning your calls? Just catch a sigh? Is body language causing feet to point for the door? You've overstayed your welcome on that subject! Move on, or call your support group. Is that harsh? Yes. But not everyone wants to hear about your health 24/7.
- Try to be positive. Yes, I said that in #1, but it's so important I wanted to say it again. In my case, I can fall back on "it won't kill me" but unfortunately not everyone can say that. But there has to be something positive to say, right? Even if it's just to compliment the nurse who is helping you - a simple "nice socks!" will do. Staying positive makes it easier. Don't believe me? See #2!
Please give a hug to that 1 of 2, or to yourself if you're the one! I "get it"...
(logos courtesy of CoolText)
