When I meet new people and tell them what I do, which in turn tells them what I have, I get a variety of responses. Curiosity, that's common. Empathy sometimes too. Compassion, not really, but I think that's because I work so hard to appear "normal" for the few hours a week I leave my house and am around living and breathing people. From the folks who know what Fibromyalgia is because they know someone who has it, nine times out of ten when I ask how that person functions I am told, "Well, not too well. But she doesn't really do anything to make herself better." Which royally pisses me off but in order to further our cause and not alienate the healthy I sweetly let them know it is startlingly common for Fibromyalgia patients to have a really crappy quality of life.
There is validity to this point, don't get me wrong, but it's such a common judgment marker that really shows me how far awareness has to go. It is extremely difficult to function, let alone "do something to make yourself better" with Fibromyalgia. People just don't get that. More to this point, however, is the fact that yes, we the patients must do a lot to make our lives better. This illness will literally take it all. Health, sanity, happiness, relationships, family, career, housing, health insurance, automobile, the freakin' clothes off your back. All of it. Everything a person holds dear and needs to survive this crazy game called life. Simply the act of getting Fibro managed for a great many people is the hardest thing they will ever do in their entire lives. But nobody seems to know this, cares to listen or begins to understand. They don't acknowledge what fighters and survivors we are just to get up in the morning and struggle through each day with a 10,000 lb. elephant sitting on our backs. So yes, we do have a responsibility to do as much as we can to improve our symptoms, but our progress cannot be measured by the expectations of a healthy person because we are not healthy people.
Some truths about Fibromyalgia:
1. We are sick, not depressed. Now we may be depressed because living with chronic illness is depressing but Fibromyalgia is not a mental illness and is not caused by depression. It is caused from a variety of different reasons working together.
2. We hurt as bad as we say we do, and often even more, but at a certain point the pain gets so big it becomes impossible to describe. Yes clothes, jewelry and even the lightest touch or sitting up can be excruciating. This pain is not being made up or over exaggerated for the sake of gaining empathy. It really is that bad.
3. We cannot take an over the counter sleep aid and count a few herds of sheep and fix our insomnia. Our central nervous system is ramped up and won't shut off. We could count the grains of sand on the beach and still not fall asleep because our sensory input is going haywire, hence the out of control and indescribable pain. On the rare occasions sleep isn't an issue there are still physiological problems present that prevent us from reaching the deep sleep stages necessary to maintain the human brain and body.
4. We don't forget things because we are aging, spaced out or drugged up. We forget them because we are cognitively impaired. See #3, don't sleep for two weeks and then tell me how sharp your memory is. Now just keep doing that for a few years...then add aging, medication and a life full of problems to that already impaired memory. And pain, constant and relentless pain.
5. We are sick and keeping up with the affairs of the healthy is usually one of the first things to go. When something is so important we can't bear to miss it we conserve our resources and push ourselves hard to engage in the activity along with everyone else. This doesn't mean we aren't in pain, only do things we want to do and use our illness for an excuse to get out of everything else, or don't pay dearly for the push. It just means if we are gonna be bed bound or in so much pain a torture rack sounds lovely, it's gotta be something that's worth it.
6. We want more than anything in the world to have our lives back. We miss our careers and friends and family. We pine for our independence and to become the capable people we once were. There isn't much we wouldn't do to have our health back, regain our lives that have been flushed down the tubes of pain and sickness. However, refusing to try every exotic berry, supercharged vitamin or special diet that crosses our path does not mean we like being sick and want to stay that way. It simply means we don't want to try that exotic berry, supercharged vitamin or special diet because we have tried hundreds and haven't found a miracle cure yet.
So I guess that is my long winded rebuttal to the calloused statement that got me started on this rant in the first place. No I don't speak for all patients, but from the thousands I have met I know my words ring startlingly true for entirely too many.
Thanks for joining,
Leah
