What exactly do I mean when I say I am "LIVING" a fibroLIFE?
I get asked that a lot, but not everyone is asking me for the same reason or looking for the same type of answer. When people who do NOT have Fibromyalgia (FMS) ask me, they are asking an entirely different question that what those who DO have FMS are asking.
People who do NOT have FMS are actually not asking a question...but rather they are making a statement. Basically, most of the time what they want to say is, "Uh yeah...you are LIVING and you have FMS...I do not see what the big deal is about that!" They also often want to...and sometimes do...follow that with, "You do not look sick to me!"
People who DO have FMS are asking a question, but often it is rhetorical. Either way, their main point is that FMS keeps them from living the life they used to LIVE, so much so that they do not really feel like they are LIVING anymore.
So for those who do NOT have FMS, I have to first make them understand that no one can look at someone and tell that they have FMS. This is not any different than someone who has high blood pressure, diabetes, or a number of other serious medical conditions. Getting them to accept that fact however is actually my challenge. The difficulty actually lies in the fact that our symptoms vary so much from moment to moment, hour to hour, and day by day. In their mind, it often seems we are only feeling badly when it is convenient for us to. The fact that most of us with FMS require pain medications and many can not work or do many of the things they used to do seem to fuel this notion. When they become aware of the fact that there is not a blood test or some sort of scan to definitively diagnosis FMS, the word hypochondriac starts coming to mind as well. Because they are often basing these notions on their own observations, it can be very difficult to change their minds. What you are saying just does not line up with what they are seeing, which stacks the deck against what I have to say before I ever get a chance to speak.
For those who do have FMS, I have a different, but perhaps even more difficult challenge. I have to convince someone who often does not feel like getting out of bed, perhaps has lost everything because they can no longer work, and who has likely had doctor after doctor tell them that they cannot find anything wrong with them that, in spite of this, they DO STILL HAVE A LIFE and YES, THEY CAN LIVE THAT LIFE. It is not mere observations I am up against; it is their own personal experiences, feelings, and their current status that I seem to be flat out contradicting! Basically...and understandably...to them it seems I am agreeing with all they say they feel, but still telling them they are wrong. More than once, this type of conversation has gotten really ugly really quickly. I have actually had someone storm out of a workshop, thankfully without saying all I know she was wanting to say to me!
The truth is, I understand both points of view...and I do not blame either group for having the convictions they have. Actually, if either type of person is asking me about FMS at all, I am thankful; at least they have given me an opening...a place to start. Far too often, people from both sides only want to hear what they have already concluded for themselves.
Making it even more difficult, I really can not answer either side of the issue with a couple of sentences. FMS is far too complicated for that, even when I am starting with someone who does NOT already have preconceived notions, let alone when they do have. Those who do NOT have FMS usually are not looking for a mini-seminar, which is what it takes to explain it adequately, and those who DO have FMS do not feel like listening to a mini-seminar on something they already know about all to well because they are dealing with it themselves every day!
Because of this, over the years I have tried many different tactics, different variations of replies, etc. To be honest, I am still working on finding a concise reply for either side of the question. Even more honestly, that is ok...because USUALLY, if I am approached by either someone who does or does not have FMS, they are not really ready for my answer. What they really need is for someone they perceive as "knowing about this stuff" to listen to them. When I do that...just listen...I find out exactly where they are in their journey in learning about FMS, I gain their confidence, and I know where to begin and how to proceed with the discussion.
I know: I have written a lot and you still do not have an answer. That is because, as badly as we may all desire it, there is not a simple response to that question due to the very nature of FMS itself and the variety of ways it is perceived. All I can do here is offer you a brief statement that applies to my personal journey with FMS at this time. When I say I am "LIVING a fibroLIFE", I mean that each day I am doing my best to apply what I have learned along the way to be as healthy as I can be, in spite of having FMS. Each day, I am doing my best to LIVE the LIFE I want to have, as much as is possible.
I am sure it is not the same as it would be if I did not have FMS...but do the people with high blood pressure, diabetes, etc. LIVE exactly the same LIFE they would have lived without those conditions? Probably not...but who can say?
My point, which is actually basic, but often not applied when it applies to ourselves, is this:
We all have ideas, dreams, ambitions, goals...but none of us really knows what tomorrow holds. For each of us, SOMETHING will come along from time to time and alter our course. True, for some the alteration may appear to be less drastic than it is for someone with FMS...
is not that just OUR preconceived notion of someone else's reality?
For that question, I do have a concise reply:
YES, it is!
Gretchen Van Deusen
8/21/2014 02:56:24 pm
I have had fibro (CFS, epstein-barre, tendonitis and arthritis, spinal stenosis and degeneration, as well as ruptured discs----all added to the fibro over the years) probably since i was a kid. it took years before i was diagnosed (approx. age 32) with something other than "growing pains." i have always had a very active lifestyle and also did years of heavy, physical work, which i enjoyed. i have changed jobs, modified jobs, all to keep going. eventually, there were no more modifications to make. i have watched myself over the years giving up the kind of work and play i once enjoyed. each year, a little more is taken away. today, i am one of the FM people you mentioned---i had to give up my house b/c i could no longer care for it and have had to stop working. i gave up my animals, car, job and home. i have 'good days,' but i am in pain EVERY DAY. i am allergic to many meds that are prescribed. i rest as often as i need to, but try hard to be active as much as possible. you are right when you say there is no clear way to explain fibro. it truly is minute by minute, etc. unless someone lives it, they have no idea.
8/22/2014 02:31:38 am
1/15/2015 03:30:18 am
I know what you are trying to say , because my Husband who has back & nerve problems doesn't understand how much from head to toes my body hurts & even the pain meds don't help much. He doesn't have problems with meds that could help , but I do. Thease are just a few things we go through, but I have to say he try's to be here for me anyway.
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