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Just Keep Swimming

Invisible illness, doctors and care.

Photo: Volkan Olmez 

For years I have struggled with an unnamed illness that just didn't seem to have a cause. My test results would come back clear. There was no diabetes, Lupus, STDs or arthritis. I'd been diagnosed with interstitial cystitis, IBS, gastro-reflux, severe sleep apnea, depression, and anxiety. Even with treatment for all these other conditions, I still felt constantly sick, achy and fatigued to the extreme. Finally, after a barrage of not so great doctors (who treated me like I was stupid, lying or didn't know my own body), I found an amazing clinic with doctor's who would actually listen to me. I've been diagnosed with fibromyalgia.

Fibromyalgia has no definitive test that can give a doctor a diagnosis. Instead it is a cluster of symptoms that researchers can't find a clear cause of. It seems to be related to brain structure and nerve pathways. Your brain misinterprets information and constantly reads pain from your nerve pathways which acts like a trickle of water in dirt. As the water trickles in the dirt it wears down a deeper and deeper path. This is also what happens with chronic pain. The pathways get deeper and more sensitive. Some doctors refuse to believe that fibromylgia exists because it does not have a clear diagnostic test. If you have a cluster of symptoms and respond with pain in several pressure spots, it points to a possible diagnosis of fibromyligia. Unfortunately, because the condition is not well understood there is not much in the way of treatment.

Here's a definition straight from the mouth of Wikipedia: "Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and allodynia (a heightened and painful response to pressure). Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some people also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently associated with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms."

I unfortunately experience all of these symptoms with migraines and nausea thrown in just for fun.

Also from Wikipedia: 

"Some members of the medical community do not consider fibromyalgia a disease because of a lack of abnormalities on physical examination and the absence of objective diagnostic tests. Yunus has referred to some physicians' belief that FM is psychological in nature as disturbed physician syndrome (DPS): "It is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say."

For me, fibromyalgia is very real. I am in constant pain. My nerves feel like they are on fire, my muscles ache with the slightest provocation, I never feel well. I haven't in years. A diagnosis doesn't really do anything for me but it at least makes me feel that I know what it is I am trying to treat and maybe I will eventually get it manageable. Living with a mystery in your own body is scary. Doctors treating you like you are a liar or idiot when yo know something is wrong does not help your feelings of hopelessness and depression.

Another difficulty is I am losing my ability to work and struggling with getting help from the government. Every time I try to deal with them, I get the feeling that the people in power would prefer that all the poor people, disabled people, sick people, and the downtrodden would just go somewhere and die quietly out of the way so they don't have to look at it. I want to work but I physically can not. I can't stand for any amount of time, I can't lift anything, I'm always in pain, I am always fatigued, I even sometimes have cognitive issues where I can't focus or I feel faint. I don't want to be sick; I don't want to use the system. I won't if I wasn't in dire straits and needed the help.

Every day becomes a dull grey cloud of sickness and pain and all I can do is trust that I will make it somehow. I feel blessed that I live in a country with socialized medical care so I can get free treatments and medication. I could not deal with this without it. I also feel blessed that I found an amazing doctor at a women's clinic who really listens to me. I wrote this to let other people know they are not alone out there when they are going through illness and disease, especially the invisible ones. There are a lot of us out here and we are here to support you in anyway we can. We need to help each other to get better.

Sometimes, you just gotta keep swimming...

Sarah Sparks
Sarah Sparks

Witchcraft poet, neurotic sex symbol, over-educated sadist, and generally only dangerous to herself and a few unfortunate bedmates. Found haunting the halls of academia, frequenting shady establishments and eating candy at home in bed.

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