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A Little Experiment
Thu, 07/29/2010 - 4:27pm
Today I wanted to write about families' understanding of fibromyalgia based on my recent experience. This year my parents will celebrate 50 years of marriage. What an amazing accomplishment and I know it hasn't been easy. The "kids" talked about how to honor this and decided to all go to a cabin in a beautiful area of Ohio for a few days to just enjoy each other. Well, this past week we did this and wow, what a beautiful time we had.
My parents have always worked hard for everything they have and they passed this onto all of us kids. There are three of us (biologically), I'm nearing 40, my brother 48 and my sister 46. My brother and sister are both married with kids. Then there's me, sick, on disability, dealing with one new symptom after another. No longer able to work, no kids, no spouse.... hmmm, feeling a bit like an outsider. Nothing is ever said, and yet, it's always kind of lingering. So I decided to run a bit of a personal experiment.
At various times, I would bring up fibromyalgia. I would speak of the 2 groups I have started and manage. I would talk about a new opportunity that just came up that I find amazing. I would talk about writing here or on WebMD where I am a health ambassador. And each and every time, I would watch my family's faces glaze over and I would hear them change the subject. Every one of them, every time.
So I've done some self exploration. Do I talk about fibro too much? Do I whine or bring people down? I don't think I do either. I feel like I've taken this syndrome and told it that I am in charge here and made the best of my circumstances. Fibro has become my job! I fight for my own health and I fight for other's. Isn't that the right thing for me to do? Or have I let myself become defined by my fibro?
I guess in the end what I'm realizing is I have to live and be ME. That means I have to be comfortable in my own skin, and for me, that means talking about fibro. It is a major player in my life, and not just because of all the new symptoms or ongoing pain of fibro, but because of the work I do and the people I meet due to fibro. I'm grateful for all the gifts fibro has given me. Yes, I'll say that again, I'm GRATEFUL for all the gifts fibro has given me.
Even when family can't and don't understand.
__________________
~~Aimee
Aimee Shannon is a licensed social worker who has fibromyalgia along with a collection of other illnesses. Aimee is passionate that those dealing with chronic illnesses need education and support to best manage their illnesses. Along with contributions of writing for Lumigrate in 2009-11, Aimee can be found leading a support group on Facebook, as well as in-person support groups in the Dayton, Ohio region. Please connect if you wish, at http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116
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I just think this is one of the top things ever written on Lumigrate, personally. I hear this in conversation with people I know 'in the real world' who have fibromyalgia, and those I've had the pleasure of meeting through Lumigrate and our facebook interactions.
For one, I was reminded how things were SO MUCH WORSE for me when I was Aimee's age (approaching 40 and beyond, until I found providers who would put together what I was looking into as causes -- food allergies, hormone problems, nutrition and supplements). So I DO hope the worst is behind her as well, as I hope the worst is behind me (and it's appearing that's the case, as I've had challenges in the last year which have tested me pretty good! I definitely feel dinged but not broken from it).
I not only have had the experience of having my health issues sporadically understood or completely MISunderstood and construed in such an unbelievably hurtful and harmful and quite frankly immoral and illegal way within systems I've been a part of in the past (work, family, personal/friendships), I've also had the interesting experience of going into NEW systems/families/work situations and gotten to see what happens.
It presents some challenges, that's FOR SURE. I suggest staying focused on looking at why this happened to us (finding a cause), owning it, and then deciding if we're being part of the solution or the problem. Every person has one thing in common: we have 24 hours in a day. We have varying energy, but energy is another resource. Money is the last resource, and on THAT humans vary dramatically. I personally believe we are best to ourselves when we focus our time and energy on things that are doing us the most good the fastest, budget that we need to also give some time to those that are outside of those immediate parameters, and trust that others who fall outside of that will be doing the same thing.
I've had the good fortune this week of seeing two very close old friends who unfortunately have siblings in who have utilized our regional medical experts, so were in town. People either stick to you or they don't. It's always a choice on how you spend your time and with whom. "Systems Theory" is so very interesting on how things cannot change much at one time, and a system has a place for each of us AND it doesn't do well when someone changes. Think about a mobile like you have above a crib.... if someone comes in or drops off it destabilizes and wobbles...If you make one of the items be different (picture growth by 'getting bigger/heavier') it'll also wobble that whole mobile and if the other objects on the mobile don't ALSO 'get bigger' then the whole thing will sit there and bobble and be out of whack/balance.
So, very simply, your options are to try to get the other items 'boosted up' to where you are with your growth, shrink back and be like you were before, or a compromise of both. OR you can hop off and let the mobile be very upset for a while and then will get back to how it was, just with one less 'thing' participating.
And for those who want to make the others grow, I hope Lumigrate provides MUCH information for that now and in the future. THANK YOU AIMEE for bringing this subject up. I hope all who have comments and advise will write about this very common thread we with fibromyalgia share. ~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
This is a great subject.
I have family that says they understand, a few that do, and a few that don't. Out of the ones that do, my mother and step-mother totally get it. My mother really does because she also has it. My step-mother gets it completely. I've even had a comment made from an aunt that her back hurts, and she's tired so she must have fibromyalgia too. My step-mom, God love her, told her it wasn't that kind of tired or that type of pain. She's seen me go from having a very active life to almost none at all. I'm so happy she really gets it.
Then, I have the ones that say they understand, and I would have to say that they seem to most of the time, but really don't. These really are the ones that can hurt you the most. They make comments and don't understand how much they hurt us.
So, I thought your experiment was a good idea Aimee. I have brought up the subject of fibro to all three groups: The ones that get it, the ones that SAY they get it, and the ones that don't. The third group, changed the subject or rolled their eyes or both. The second group, and I have to say I'm sorry to includes my sister and brother, also changed the subject after their faces glazed over. The first group was interested in learning more about it.
So, here's my new philosophy: Stick with the ones and a few twos and throw out the threes.