http://www.facebook.com/group.php?gid=134015496622401#!/group.php?gid=134015496622401
Fibromyalgia: Fighting For A Cure.
I created this group to raise awareness for this horrible...cruel...overwhelming and exhausting disease. It's a support group for not only FM patients but for their friends, carers and families too.
I honestly believe spouses, close family members, friends and carers are often overlooked. FM is just as tough on the people living with us - whether we live with our husbands, parents, siblings, other relatives or friends.
My husband is amazing, and I am fully aware of how lucky I am to have such a supportive and understanding man in my life as it's vital to the quality of life for every Fibro patient. Unfortunately, so many women (and men) who suffer this disease do not have the sort of understanding, reassurance, patience and love that I do...and this not only saddens me, it makes me quite angry. I wonder if these kind of unsupportive spouses know that the leading cause of death from this condition is SUICIDE.
Now, like most people who suffer FM, I have come to accept the fact that most of the people in my life simply don't understand my disease. At first, I wasn't cool with this...it upset me, it angered me and mostly, it really disappointed me. The lack of interest, empathy, care and support really got to me. I couldn't understand why these people weren't "being there" for me...if someone in my family, say my daughter for instance, came to me and said "Mum, I have a chronic and debilitating disease with no cure and my life will never be the same again"...do you know what I'd do? Firstly, I'd hug her for as long as she'd let me hold her. Secondly, I'd ask her to explain the disease/illness to me if she felt up to it. Thirdly, I'd let her know how much I loved her and offer ANY sort of emotional support I could and lastly, I would research the condition so I could be as informed as possible. Two people in my life reacted the way I would of above...my husband, and my brother.
That's not to say that other people in my life don't care, because they do. I know other people in my family care, they just don't understand. My best friends care, but they don't understand. I'm not allowing myself to be upset about that anymore...my energy (when I have some) is just far too precious to waste on trying to "make" other people understand my condition. However, what I can't and will never be able to grasp is how so many husbands, wives and partners out there simply don't even TRY to understand their loved one's illness. Instead of researching their loved one's condition, they judge them. Label them. Discard and dispute their feelings. I see this far too often and it honestly makes me angry. If your wife, husband or partner came home and told you they'd just been diagnosed with some form of Cancer? would you treat them this way? If he or she came home and told you they'd been diagnosed with Multiple Sclerosis, would you treat them this way? - NO? I'd hope not. I am shocked at how so many FM patients are forced to live with people who have limited to nil compassion for them. It's ridiculous and just goes to prove how much we really do need the awareness to be raised.
Here is an interesting fact for the unsupportive spouses of those with FM. The suffering of FM and CFS is pretty much on par with MS, the suffering both physically and emotionally is real. I can't believe we're in 2010 and we still need to say this. Doctor's simply don't just prescribe the harsh and addictive medications we're on for a "fake" medical condition. They're not allowed to write prescriptions just to shut their patient's up. And here's another thing...from the research I've done, most FM patients go on to be diagnosed with another autoimmune disease in the first few years of diagnosis. As I said in my other post, my doctors are concerned about Lupus. One of them is convinced I have a progressive form of MS. But even if these other illnesses were not a concern, even if it was Fibromyalgia with no other underlying medical conditions (which it is for a lot of people) - the support, care, empathy, patience and compassion is still needed. It's still deserved. It's still vital.
As I said, we're in 2010. It's time for the BS to stop and for the supporting to begin. It wasn't so long ago that medical conditions like MS, Lupus, MENTAL ILLNESS and ADHD were looked at as "fake" illnesses/diseases. FM patients have enough trouble finding doctors who will understand and support them, they shouldn't have to fight to be heard and helped but they do. The last thing they need is to have to fight in order for their own lovers to understand and support them.
What ever happened to "In Sickness And In Health"??? I'm off...I think I'll go and hold my husband and thank God for blessing me with such a real man.
Gentle hugs everyone.
Em
xoxo
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