Who in your family and circle of friends know what we go through?

Discussion in 'Fibromyalgia Main Forum' started by 1937marie, Aug 7, 2011.

  1. 1937marie

    1937marie New Member

    With my circle of some 20 something only my Husband knows and has stayed with me for the near 25 years.
  2. sascha

    sascha Member

    many over the years both friends and family have shown they don't consider that i'm really ill. i was super-sensitive about it for years. really got upset. i've had all sorts of feedback- some direct, some that i hear about from others- that people who know me think i'm hypochondriac, have emotional problems, could think 'happy thoughts' and get myself out of being ill--that cfids doesn't exist. on and on..

    my sons get it totally- they're grown up now- never questioned me. i have a cfids friend who of course totally gets it, and it's great to have her around. a friend of over 10 years just recently indicated AGAIN that if i exercised and walked i could heal my inability to walk, but now i just sort of make a loud rude noise and laugh at her.

    it's a long road dealing with this. i think for a time i had trouble believing this was happening to me. guilt, embarrassment, denial- a mess of conflicting emotions accompanied the undeniable evidence i was experiencing that i was unaccountably constantly ill.

    guess we have to make peace with ourselves over it and learn to shrug off others' uninformed opinions. and good luck! sascha
  3. ellikers

    ellikers New Member

    I've had relatively good luck, I guess I have a good community of folks that tend to be compassionate even if they don't totally "get it."

    I have had CFIDS and FM and chronic myofascial pain, and my parents, all my close friends and partners, coworkers, extended family and even acquaintances tend to know about my past (or current, but thankfully more mild now) health problems. I don't share all this info to people I don't know at all, or folks that I get a bad "unsupportive" vibe from, but I tend to not get close to folks like that anyway.

    I wish everyone had as many supportive and understanding people around them as I have been blessed with. I've certainly had negative reactions, particularly medical professionals who don't know s*%#, but not from people I trust.

    I use my experiences to help raise awareness for these issues and I explain them to folks who are interested, and have offered support and suggestions (that have really helped) several people in my life who have had some form of chronic pain or illness. But that's because I have the energy, willingness and comfort to do so.
  4. earthdog2000

    earthdog2000 Member

    Hi Marie!

    I personally have only had one person who truly understands what I go through and that is my sister. This is because she also suffers from fibro and CFS as well as Panic Disorder. My hubby has been pretty understanding throughout the years but only to a point and mostly when I am really looking and feeling ill. Unfortunatly, I got sick only one year after we got together and we have been together for 13 years!

    My kids all "get it" to some degree but don't see me when I am really in a bad flare. I have chosen to not burden them much and try not to cancel very often when we get together. My one son, aged 26 understands a little better because he has Panic Disorder and some symptoms of CFS. I think it is really hard for others to truly understand some of these "invisable illnesses" because they have never personally been through it.

    I must say that my parents are pretty understanding too but my dad just wants me off of the meds and taking vitamins and supplements only! I was also dx'd with Bipolar II disorder so it's going to be a while before I consider going off any meds until I cn get leveled out with the bipolar more. Fortunatly, 2 of the meds I was already on for fibro and CFS help the bipolar just in increased dosages!

    I hope and pray for the day when we can find a true cure or at least medications and or supplements that give us a better quality of life. Thanks for the post, it really made me think about "educating" those close to me a bit better!

    Faith, Peace and Comfort, Julie

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