1) It will not kill me, no matter how badly I want it to
2) It will take everything from me if I let it
3) There is a significant amount of self-pity, fear & depression I had to go through to begin to see clearly
4) This is absolutely something the 5 Stages of Grief applied to, but my order was a bit different:
- DENIAL- Doctor after doctor telling me there is nothing wrong with me and it's all in my head, and part of me believing them because this makes absolutely no sense.
- BARGAINING- With myself to just get over it already! And with those I love, work with & am friends with to understand what is happening is indeed real.
- DEPRESSION- Because this is real and I am no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and pure unbearable pain take over. If that's not depressing I don't know what is.
- ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
- ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I am not giving you any more of me. So if it is the last thing I do on God's green earth I will get something close to a quality of life back...
And
that is when it really got interesting. Without the fight, without the
anger, I do not believe I ever would have recovered to the point of "managed".
I could not comprehend how at the age of
28 the rest of my life was going to be spent a disabled invalid. But
how does a person that is in so much pain find fight? How does someone
who has been broken down, beaten and pulverized into mush
re-construct their mental fortitude enough to insist on repairing their
broken body, soul and psyche? Getting Fibromyalgia managed was
without a doubt the hardest thing I have ever gone through in my entire life.
The disease itself is bad enough, but the doubt and lack of compassion
from the world at large creeps deep into the heart of a person and
inflicts wounds so broad and scaring they are darn near impossible to
recover from. As a person looses their ability to work and support
themselves, parent their children, engage with their significant other,
maintain friendships, perform basic duties (like showering and making
the bed), participate in a social life, laugh, play or love, the despair
and hopelessness can swallow you whole!
There were people who criticized me harshly for stepping outside the confines of modern
medicine and embracing a holistic approach. Those same people would be
sitting here doubting the validity of my illness today if I were still that
crumbling, quivering, unable to function mess of a woman. But I am not. I
charted my own course, forged ahead, learned how to stop giving a
rats-woo-ha about what anyone else thought. I ceased to look for
acceptance and approval where none was to be found and clung to strength
and hope I did not know I possessed. I grabbed my life, shook it silly, believed in myself and forged on to build a better tomorrow. I kept "interviewing" doctors
until I found one that believed me and listened to me. I let the world
know I was hurting, but working on making it better. Projected a
life of confused sanity, not sloppy despair. My worst doctor
appointments were the desperate ones. The ones where I went in crying,
needing, forlorn for help, only to be dismissed and turned away. See
they don't know what to do with us, we are messy and complicated. Our
diseases are too new to their scientific realm so therefore are
dismissed. But let me ask you one question. Will medicine or science
ever progress or discover anything new? Of course it will! And one day
we will be understood. Till then, do the best you can, love yourself and believe in a better tomorrow, for if you don't it will never come.
Thanks for joining,
Leah
This blog was originally published on 8/27/10.
I appreciate this article so much, simply because I can see myself in so much of what you have written (except that I have had several really good/supportive doctors). I have hit the anger stage and am wavering between that and acceptance - I am almost there but, as you said, it is so hard. I have set some goals, lots of small ones and a long term one. I am nearly motivated, it seems to come in bursts. Good luck to all my fibro friends - hope you can read this and see the light at the end of the tunnel :-)
ReplyDeleteLeah, you are such an inspiration. I wish I could manifest some of your strength. For years I was in pain, but thought it was all in my head. Now that I've been diagnosed with fibromyalgia, I am getting to that anger stage. But I haven't been able to over come that...yet. Another site that's been really helpful to me is http://onlineceucredit.com/edu/social-work-ceus-pain Now that I know my pain is real, I have to face it. Which is a little bit scary. Thanks so much for sharing your story, and being that inspiration for me.
ReplyDeleteYou are spot-on, pitch perfect!
ReplyDeleteThank you for voicing what I am feeling and going through. You are truly an inspiration. I am newly diagnosed and have hit the acceptance stage.
ReplyDeleteMy very first doctor diagnosed me in '84. BUT there was little he could do. Honestly, I've never had a doctor tell me it was all in my head. I've never really reached the acceptance stage. To me, there is always the hope of a new diet or something. Blessings to you.
ReplyDeleteThanks for sharing!!!
ReplyDeletethank you for sharing i am still on angry , but see-saw between anger and acceptance with a pinch of the miseries especially as each new part of my disability is thrown at me. I keep going though
ReplyDeleteLeah, as I read your post, I found myself nodding my head. I'm sure many who have suffered from fibro have experienced similar things as you. I, too, decided at the age of 26 that "just living this way" was unacceptable. The allopathic medical doctors would have me believe that my only option was to take a medication for the rest of my life that had serious side effects, only put a dent in the pain, and made me feel foggy all the time was my only option. That was unacceptable to me. So, I sought the help of a holistic physician. After a lot of education and changing a lot of lifestyle habits, I can look back and say it was all worth it. My quality of life is SO much better. I'm happy for you.
ReplyDeleteI don't think people really understand unless they have fibro or some other chronic disease. We need to try lots of different therapies as we have lots of different symptoms. I use massage, acupuncture, exercise, diet and hydrotherapy.
ReplyDelete