International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018
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Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia.
Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.
I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.
I’ve struggled with the concept of acceptance. I know the condition exists, that what I experience and struggle with are all very real, but accepting it is hard. Instead, I’m working on negotiating the terms of acceptance with myself. I’m keeping an open mind when it comes to further diagnosis and treatment and I’m accepting the way my body is now while trying to better manage the condition on a daily basis.
I still get frustrated, especially with the chronic exhaustion, pain and so-called ‘brain fog’. I still get disheartened and fed up with pain. I still feel a sense of loss, a weight of grief, and a huge deal of worry over the future.
I still get sick and tired of feeling so sick and tired.
But I know I’m not alone. While I wouldn’t wish fibromyalgia on my worst enemy, there are sadly many people dealing with this condition. There are countless hurdles in diagnosis and perhaps more still in treatment and management. Then there are the social implications such as feeling like you’re not believed or that you’re being negatively judged. Then there are the small and large life ramifications with work, social life, relationships. The knock-on effects from the plethora of difficult symptoms is potentially huge and very misunderstood and underestimated by those who haven’t had their lives in some way touched by fibromyalgia.
Comments and media attention, for instance regarding Lady Gaga speaking out on her struggles with fibro, have brought he condition to the fore of social consciousness recently. It’s more important than ever to keep this momentum going, to keep pushing forward. To continue campaigning for change, for better understanding within the medical profession and society as a whole. For less stigma, less judgement, and more compassion for others and ourselves as warriors living with fibromyalgia.
This International Awareness Day also includes the following, with their respective colours :
Purple : Fibromyalgia (FM)
Blue : Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS)
Green : Multiple Chemical Sensitivity (MCS) / Lyme
You can also find out more on the May 12th Awareness day on Facebook.
What have been your biggest struggles with these conditions (fibro / ME / MCS) ? Have they been with diagnosis, treatment, social implications, emotional impact, work?
Here’s to hoping that more awareness, more compassion and greater understanding are grown and nurtured so that we can live the best lives we can regardless of the illness.
You can find me on Facebook too so feel free to get in touch 🙂