I have hated the word disease for a long time. What I don’t really know is if that became a new phenomena once I entered the illness world or if I really always felt that way and just had no personal attachment or reason to think about it. I had a long discussion with a friend about this in the summer. I just never liked the sound of the word disease. It sounds so gloom, doom and permanent. What kind of image do you think of when you hear the word disease? Hope, Inspiration, Light? I don’t.
I prefer to use the word condition. Now, I know this word does not necessarily sound all joyous and full of sunshine either. But conditions are transitory. They change. I don’t own a condition. Why should I get any better if I am convinced that I am plagued with a disease? Think about the word disease in context of our language. We typically talk about it in terms of very grave and grim situations. We talk about diseases wiping out populations. Diseases we have to get under CONTROL before they are a pandemic. A plague that’s going to take over. CDC= Center for Disease Control. Diseases in our language are either a) curable or b) not curable. Black and white. You fit it in one box or another. But this is another topic for another time. The importance of wording and beliefs.
Anyways. I don’t want to spend tons of posts writing about “dis-eases” but on the same token, I do feel responsible in sharing and promoting awareness of conditions not well known because I am not the only one out there. The current MAIN condition I am dealing with is Chronic Fatigue Syndrome. Also known as…ready for this?
1) Chronic Fatigue Immune Dysfunction Syndrome
2) Post Viral Syndrome
3) Myalgic Encephalitis (Europe)
4) Chronic Mono/Chronic EBV
5) Low Natural Killer Syndrome
6) Yuppie Flu (those poor people who dealt with this stigma in the 80s)
Never heard of it? No surprise. Most people haven’t. When they do, it seems pretty self explanatory and something any person could easily suffer from. The classic lines: “I think I have the same thing.” “I’m tired a lot too.” “Yeah people get depressed sometimes.” “You should drink coffee.” Silence or Change of Subject.
A lot of the medical community still hasn’t acknowledged it’s real, claiming it to be a wastebasket diagnosis. I thought the same thing for quite some time until I began to really understand it further than the b.s. name of being chronically tired. Ha. If that’s all it was.
Unfortunately, a lot of people tend to get thrown into this label if doctors can’t figure out what’s wrong with them hence the perpetual cycle of the waste basket diagnosis/lack of respect. And then after all that you get a diagnoses and then what? Most doctors don’t know what to do with it besides offering an anti-depressant and wishing you luck on pacing yourself. Well that’s really useful.
There are only a couple of doctors that deal with it throughout the country. They stay on top of all the research, think outside the box and use “out of the box treatments.” I am lucky to be working with some AMAZING people. I would be glad to give referrals for people who are in the process of trying to find their “right doctor.” My “team” consists of all different practitioners, MDs, DOs, NDs, PTs and more. I will devote another section to that for those that are interested. The best thing you can do: find people you trust, get a team together, make sure they are all on the same wavelength and make sure they communicate. It is probably beneficial to work with someone that specializes in the area. It takes time. I have seen 32 doctors over the past two years and I think there are only a couple of specialities I haven’t seen, one being geriatrics. But with this condition I can promise you one thing: your path to wellness won’t be in any hospital and the average doctor’s office probably isn’t the place either. But don’t give up hope. Please Please Please always remember you are never at a dead end.
To Be Continued……