The Fibromyalgia Lie: One Woman’s Battle With The Medical Condition That So Few Understand
It’s the blank stare I get when I say the word ‘Fibromyalgia.’ That’s my answer to my good friend and fellow film-maker’s heartfelt plea of, “Why didn’t you tell me?” A couple weeks ago, he asked me an extremely personal question regarding my health; it turns out that a close friend of his – a young vibrant woman – was diagnosed with Chronic Fatigue Syndrome and, in his conversations with her about her challenging new reality, he had the unfortunate epiphany that another of his close friends was suffering from the same symptoms. So, he asked the question, and in alignment with my desire to always tell the truth, I caved and confessed my health care sins... Yes, I have a disease; it’s called Fibromyalgia and this is what it does. It’s like waking up every day to the day after the flu. You know that low energy, drag yourself out of bed because everything aches day; the day when all the other symptoms of the flu have gone away and, even though you don’t have to spend the day praying to the porcelain God, you are still going to spend the day praying... Maybe you will pray for health; maybe you will pray for death; maybe you will just pray that you never, ever have to feel this way again. It’s that day when you aren’t coughing or sneezing anymore, but every muscle that was involved in the last few days of continued contraction for various disgusting reasons has decided to rebel. All those muscles you never knew you had; who knew an eyebrow could hurt so much? It’s that day when you are in a perpetual mental fog because, thanks to your body’s multiple natural cleansing methods, you haven’t really had much sleep in the last 48 hours due to the new demanding relationship that you have built with your tissue box and your toilet. If you’ve ever had the flu, then you know all about that day, yet you also know that the day after isn’t as bad and eventually all that pain goes away. Unfortunately for me, and thousands (they say it could be millions) of others out there, that day never ends. It’s the constant struggle of people afflicted with Fibromyalgia to try to explain where they hurt, how they hurt, and Heaven help us all, why they hurt.
There are no outward signs, no discernible physical effects on the body, no marks, no bruising; Hell, half of the time, there aren’t even bags under my eyes. So, how do you explain a disease that you can’t see? My flu analogy is the closest I think I can come, but that’s not what this piece of writing is about. This is a confessional. After my two hour long authentic and heartfelt conversation with my cherished friend, it has come to my awareness that I haven’t been honest. I haven’t been honest with my friends, with my family, with my readers, or with myself. I have spent so much time trying to keep up a normal life that I have forgotten to honor the truth of things as they are in my current reality. My current reality is this; I have Fibromyalgia but it does not have me. I have spent the last four years of my life – between being a wife, a mother, an author, a radio show host, and a documentary producer – dedicated to finding natural ways to manage this disease. I am proud to say that I am completely prescription free, thanks to the near fatal reaction four years ago to medications they were using to treat my disease, which forced me to find alternative methods of healing. For the most part, I get by, but, I have had to make some serious changes, both to my lifestyle and to my diet, and, as I have just discovered, I will have to continue to make more changes until I am completely comfortable with my state of health and wellbeing. I have had to sacrifice more than I could ever explain here, my family has had to sacrifice more than I am willing to admit here, and my friends – who would gladly do the same – have had to sacrifice nothing because, for the most part, I just never let them see how truly sick I was. I just kept telling that same old fibro lie – a lie I heard echoed today by a friend who also has fibro – “I’m fine.” I did, however, say I would be honest, so, here it is.
The truth is that I’m not fine. This past winter has challenged me to the brink of breaking. I might have a few good days, but I still have bad days and bad days can last a day, a week, or a few months. I never know, when a Fibro flare-up hits, if I will be able to get out of bed tomorrow, next week, or next month. Now, I know it sounds like I’m exaggerating, but that’s only because very few people are openly talking about the effects this disease is having on the people who have it or the people who love the people who have it. Why not? Is it because the medical community knows so little? Is it because the disease is still semi-controversial? Or is it simply because those of us who have it are too sick and too tired to take the time to be honest about how we really feel? We suck it up and put on a show for the outside world – and, sometimes, even for those closest to us – because we’re in too much pain and we’re too exhausted to jump through the societal hoops of acceptance. So, I’ll take one for the team, We are sick! Not just ‘in our head, can think ourselves better, if only we could find something that makes us happy’ sick.
There is actual scientific proof that this is a physical disease that is more than likely hereditary – my mom had it, but that’s a whole other blog – and we need help! I’m on a mission; a mission not only to manage the symptoms using natural healing methods, but to share what I have learned with others. I’m on a mission to get healthier and stronger and to do whatever I have to do to take my life back. I’m on a mission to make sure that others out there who are praying for death have a voice willing to speak for them; somebody who is willing to fight for them and somebody who understands what it is to be them. In the meantime, for those of you out there reading this who have Fibro; don’t give up, help is out there and there is hope for a brighter pain free future for all of us. And for those of you reading this who have a friend or family member who has been diagnosed with Fibromyalgia; do the right thing. Look it up, find out what it means, find out how you can help. Take the time and care enough to do the research because trust me when I say they are too sick and tired of being sick and tired to explain it to you, and quite frankly, they shouldn’t have to. .
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