Thursday, April 5, 2012

I Only Have Fibro When I Want

Well folks we have a big problem. It is not a new one, and certainly not experienced by all. But given the nature of our illness, its ups and downs. The lilacs, mulberries and amethysts of Fibromyalgia, we have influenced popular opinion. 

"How come you went to Sally's party last weekend when you didn't go to mine the week before?" "Why can't you join us for Thanksgiving? You were off visiting your friends just a few weeks ago!" "You just pick and choose to have Fibro when it is convenient for you." "You use Fibro as an excuse to not live your life. You won't work but went out to dinner last weekend."

Sadly many I have talked to have expressed the frustration of this sentiment. So let me get right to the point. When a person has a disabling illness they have to damn near live in a bubble to manage you bet your ass we pick and choose what to do with our "well" moments. We just don't have that many of them! Did it ever occur to the offended persons that you like Sally a whole lot more, and had an astronomically better time at her party than you would have had at theirs? Are they aware you did as close to nothing as possible for a week before and after to even make it to your friend's house out of town? Have they ever stopped to think you are still a person with hopes and dreams and desires even though you got sick? The basic tenants of your personality are being squashed by awful pain, but have never gone away? And you have as much of a right to snippets of happiness in your life as they have in theirs? 

I was chatting with a couple of my Fibro friends not too long ago. One of them had been harshly criticized. She went to a party and danced the night away. The court of public opinion came blaring back at her in full judgment. She was accused of using Fibromyalgia as an excuse to only attend the activities she likes, and avoid the ones she does not. Rationalizing that because she danced she was clearly not that sick. Well the real story was in order to dance at this party she had to pump herself full of "pain dullers" and spent the week in bed after because of the pain. But dancing is her most favorite thing to do that brings her joy. She is an adult who is allowed to make her own choices and suffer the consequences as they come. To her, this was worth the cost. Another friend said something that brought this home so acutely it gave me shivers up my spine and made the hair on my arms stand on end. "Criticizing you for enjoying yourself is not love. You want to know what love is? Dance harder."

Thanks for joining,
Leah

14 comments:

  1. This is the most awesome blog you have written thus far Leah! Very empowering and tells it just like it is!

    ReplyDelete
  2. Very well put! I have some family members who accused me of faking my illnesses to avoid helping with get togethers. I made the decision last year to no longer attend them at all. Pasting a smile on my face to placate people who don't even TRY to understand is simply not worth the days of deep pain that follows.

    ReplyDelete
  3. I have encountered this kind of behavior from people many times. I had a very good friend for a while that could not understand why I cancelled on her so often. So thankful that my 2 best friends now get it. Thanks for sharing.

    ReplyDelete
  4. People don't get it. Socialization is an essential part of wellbeing. Those of us with Fibro do it for our mental health. We can't always choose when we socialize due to our health, but when we are able, we do because we realize it is healing. The invisible disease that we have is a feminist one. Fibro sufferers are 80 percent women. I think that if it were the other way around, things would be very different. Fibro reduces women to the 1600s-we are viewed as having a mental illness, crazy and powerless. We have a long way to go. In the same way that mental illness was viewed as a female stigma, Fibro is the same. It's misunderstood, invisible, without much research funding, prey to the cure of the week, etc. It's in much need of exposure. Thank you for doing your part.

    ReplyDelete
  5. Exactly! I couldn't have said it better.

    ReplyDelete
  6. Some of my friends still don't get this.... Thanks for writing this, it just about sums up the nature of fibro. Will send this post to them. But they will probably still not understand... *sigh*

    ReplyDelete
  7. You just described my mother and it really disgusts me that she is so lacking in empathy and compassion...

    ReplyDelete
  8. I also have people who don't "get it". Some are my family members and that is the worst for me because we are all very close. I am very thankful to have a best friend who took the time to read up on Fibro to see what it was all about and try to understand what I was going through. That meant so much to me. I just wish that others would do the same.
    Thanks you for the things you say. I do not have the talent for writing that you do, so thank you for speaking for people like me!

    ReplyDelete
  9. This blog is jst perfect.......exactly my life as well,,,,,,My MIL!!!!!!Thanks for always telli g it like it REALLY is xxxx

    ReplyDelete
  10. Amen! Love this post to pieces. You spoke it straight through!!!!!

    ReplyDelete
  11. Finding your blog has been a God send. I have a hard time expressing my feelings about Fibro. You have explained how I have been treated and feel so well. People need to stop judging.

    ReplyDelete
  12. Leah, I hope your writing helps you b/c it really is therapy for us...thanks alot.
    Dancing is my absolute favorite thing to do and although my health and hang out are both shut down right now when I was able to go dancing I was heavily criticised by family and people who at the time I called friends. My husband, the one who takes care of me when I'm not well wouldn't have a problem with it, but would encourage it because he thought it lifted my spirits and with Fibro your Spirits being down or at least for me is the biggest reason for my flares along with stress and depression.

    As time has passed I've learned to earn my family's respect of SILENCE by my approach with them. I start my conversations with I have decided, or my husband & I, this is best for me, or even if I suffer later I'm going to....no blank?? in anyway allowing them freedom to think that I'm asking their opinion of how I should be running my life, right or wrong. I feel that because of me, my husband and son have to adjust, see me suffer and it hurts them too, accomodate, compromise and so on....so anytime and go somewhere and have fun and give them a break and come back happy is all worth it. Pain or not! And as far as friends for now I have a few old friends and new friends that can follow the rules of SUPPORT OR SILENCE!
    Diana Cowan
    P.S. I have to Publish under anonymous b/c I don't know how to do it the other way...lol

    ReplyDelete
  13. This is such an inspirational post Leah... thank you for posting. I feel that it is important that we do not let fibromyalgia control our lives and we still continue to do the things we love to do that we still can do. All with continuing to do what I love, I found a lot of helpful information about coping with the pain of fibromyalgia at http://onlineceucredit.com/edu/social-work-ceus-pain. I hope this is helpful for others out there suffering from fibromyalgia. It does not have to control your life.

    ReplyDelete