Chronic Pain Rights & Responsibilities

Laughing, Loving, and Living With Chronic Pain and Illness

Archive for the tag “Fibromyalgia”

Myths, Assumptions, Realities, and Confusion Surrounding Fibro

Let me start with myths and assumptions. People with Fibromyalgia are not lazy. They are not hypochondriacs. They are not crazy (at least not because they are aware of their illness!). Fibromyalgia is not something you can just ignore or “power through,” and it absolutely does not mean you are weak. Trust me, those of us who have it have gone through many days of questioning ourselves about these exact things. It is only when you recognize that NONE of these things are true about you, that you can begin to tackle the disease, and all that comes with it. AND, it is only when you realize that none of these things are realities about someone you know or love who has Fibro, that you can begin to understand them, help them, relate to them, and be informed.

Next, I would like to address the realities of Fibro. It is still very misunderstood, even in the medical community. Because it is a pain-centric illness, it is hard for many people (doctors included) to see as “real”. There are a set of sister illnesses that come with Fibro (and assist in the diagnosis of it) but Fibromyalgia itself cannot be seen, it does not manifest in visually tangible ways. Also, because it is more often a “womens’ illness”, like many other things that affect women in the medical community, it is not taken as seriously.

My own doctor, in fact, does not take Fibromyalgia seriously. He has told me as much. However, I don’t have insurance, he treats me with compassion, and because of the medications I take, changing doctors at this point would be a nightmare. There are so many ailments that accompany Fibro or are (in combanation) seen as signs of the disease, that I cannot name them all. What I will name are the ones that I suffer from. Chronic, unrelenting pelvic pain. Endometriosis (an overgrowth of the uterine lining that can grow anywhere in the body–including the brain, that causes a LOT of pain). Intersticial Cystitis (an inflammation of the bladder and urinary tract which makes you feel like you have a severe bladder infection, but shows no signs). Fibroid tumors in my uterus. Irritable Bowel Syndrome. Depression. And, most recently, chronic and debilitating migraines.

Most doctors, and people who hear these symptoms, see treating the symptoms as a solution. However, the thing about Fibro is that pain and ailments migrate. Once you have “remedied” one problem, another arises. Also, I (and others with the illness) can feel fine one minute, and be beside myself in pain five minutes later. So far, the doctors I’ve seen (and I’ve seen A LOT!) want to do numerous surgeries on me, and/or they treat me like an addict seeking pain medication because they can’t SEE the problem. I am not okay with having surgeries that inject steroids into my spine, removal of my female organs, or going home in pain, and trying to “forget” about it, and NOT OKAY with being treated like a criminal because I admit that I have pain!

I am slowly finding my way through the web of confusion surrounding this illness, and I want to advocate understanding for myself and other sufferers. There is no “cure” for Fibromyalgia, but there is a cure to ignorance and insensitivity:)

I’m “Coming out” of the Fibromyalgia closet

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I am thirty-seven years old, and I am “coming out of the closet” about the fact that I have Fibromyalgia. Over the past five years, it has been becoming more and more of a presence in my life. Up until the past week or so, I literally thought that I could “power through” the debilitating illness, if only I did this or that. Especially since the general attitude of people who do not have this disease is that you just need to, “Get out of the house…Get some exercise, or take a nice hot bath.” After spending the past three weeks with a migraine headache that was so painful, and induced so much nausea that I literally prayed to die at moments, I have finally come to terms with the fact that this is not going away. Not only is it not going away, it is a HUGE part of my life. Hardest for me to admit aloud is the recent sinking in of the reality that I am incapable of holding a regular job. I have always been very career-oriented, and driven toward my creative and philanthropic goals. I have no intention of giving up those goals, but I realize now, that I have to reinvent them. I cannot be held responsible to show up at a 9-5 job, especially one in a third-world country (as was previously my ultimate goal). I have decided to take up blogging (not just about living with Fibro, but also about my travels to Africa, and about sex and sexuality—all things that I have had aspirations to write about for years). Through blogging, I hope to reinvent my goals and participate in the world, again. So, this will begin my tell all about living with Fibromyalgia. The other topics will be on WordPress, too, and I will be starting them soon.

If you know me personally, you will be able to gain insight into the struggle I’ve been dealing with. If you know someone else with Fibro, I hope you will be able to understand, accept, and empathize with them through what you read here. If you suffer from the illness yourself, or suspect that you might, I hope that you will find comfort in reading about the familiar issues. So, this is just an introduction. I am slowly coaxing myself out of the shame closet!

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