Fibro Friendships: When You Need Someone Who ‘Gets It’

Fibro Friendships: When You Need Someone Who ‘Gets It’
Through the Fog Friendship is such a valuable experience, especially in this day and age when families often don't even live in the same state. We need to cultivate the few very close friendships we do have, and continue to invest in those friendships that are longstanding. Of course, all of those friendships and the extent to which we stay involved in them, often depends on the day or week we are having. So, how can we be a good fibro friend? For the past three or four years I have met more than 400 women who suffer from fibromyalgia or other chronic illness. There are about 100 that I keep track of, and a couple of those women are really dear to me, even though we have not yet met in real life. Concentric circles of friendships, with the closest ones being in the center. These are the ones who are there when you really need a listening ear, someone to vent with or share a milestone, or someone you could call anytime day or night. I found these women in groups I joined or started myself. Initially I really didn't know any of them, but with daily or weekly interaction, it didn't take long to establish some solid FM friendships. We have established a connection and extend a compassionate heart toward one another. It's an incredible thing to seek out and develop friendships with others who "get it." They not only understand, they can empathize. You have a ton in common from the start, you feel less alone and truly more understood than even your closest pre-FM friends. It's kind of like if you're a sin
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  1. Em says:

    Perhaps. I need my family so much. not to help me w/ day to day stuff, but to love me. seems love come in the shape of $$. there will be some when I am dead.

  2. Denise Bault says:

    Robin, you have certainly expanded fibromyalgia sufferers’ circle of friends… I thank you for that! I am also blessed to have ONE really good friend – who does not have fibromyalgia – but knows and understand what I am going through on a daily basis. SHE GETS IT. Her understanding and acceptance has made all the difference in the world. I feel so blessed to have her! I wish all fibromyalgia warriors at least one person in their lives who truly GETS it!

  3. Em says:

    When you ask if I have fibro friends do you mean mean friends who have fibro? I have no friends because they don’t believe fibromyalgia is really an illness. People who knew me long ago as strong, helpful (to the point of enabling) no longer want me as a friend. All I hear from family is accusations. Learned the hard way I am better off alone. When one’s health fails and all one has to offer is love-mostly it is my 2 year old grandson that I miss. My son knows I do not come unless he is home because his wife triggers my PTSD w/ her arrogant attitude to the point of being cruel. When she is there the tingling starts and I feel like every nerve ending in my body is aflame. An internal conflagration. Proud and haughty people are the type I cannot tolerate or tune out.
    Fibro friends sound rather selective or I misunderstand what you mean.

  4. Em says:

    Online groups I have seen are too negative and bring me down farther. Most people have people in their lives and I get even sadder. Because of severe TMJ-no chewing and the way I need to eat to keep the fibro pain tolerable means I am not invited to family gatherings because others feel guilty eating in front of me. Pretty lame reason. when I do eat what others do I am sorry the next few days I did so. Just not worth it. would I be treated like this if I were diabetic??

    I am much for fb because of the drama.

    • Julie Shenk says:

      Em, what’s that old saying? “You have to kiss a lot of frogs to find your prince”. Maybe that applies to finding one or maybe two support groups that are a better or even a good fit. I’m not into whine fests or drama fests. So I’ve had to be open and try, try, try. As a believer in Christ, I know my faith is truly what sustains me. I have found uplifting, joyful, honest, and open relationships. I don’t talk a lot of the telephone and usually only leave the home solo once or twice a week. I do enjoy being outside and my felines. So FB groups for support have opened up a vast area of HOPE and understanding. Don’t go alone, my dear. It’s worth the trial and error. And, remember, we all fall short of the glory of God.

  5. Denise Bault says:

    Em, why don’t you ask your son to leave his wife at home? Seems like a sensible arrangement for you and your DIL. Sometimes you just have to cut those toxic people out! I have and I haven’t regretted a moment!

  6. Denise Bault says:

    Em, I meant to say, “Go there when she is gone or have your son bring your grandchild over without your DIL.” Less stressful for everyone! There are certain behaviors you don’t want to model – or have modeled by others – in front of your grandson. Kids are smart. They pick up on stress…and often blame themselves. I know you and your son don’t want that for him.

  7. Em says:

    Sound good. She will not allow it. He did spend some time w/ me about a month ago and she kept texting. I finally asked him to leave to save him getting chewed out. She thinks we are talking about her-perhaps this is because this is what she does. Just because of the way a person behaves does not mean everyone else everyone else does the same.

    There was a time when some one told me something I believed them. Came as a shock to me realize this is not always true.

    I am a fighter and do what I can to take care of myself. This is not selfishness. a new way of life. A challenge and a journey.

  8. Ana Cea says:

    In my experience with fibromyalgia, I feel very lonely, because many people believe that I am exaggerating, pretending, or it’s all in my head. Many of my old friends do not understand, and are always giving advice hinting that everything is in my mind. That makes me feel very bad. I do not have friends who really understand what I suffer every day. And the truth is I do not think they’ll ever understand if it does not happen to them. I would like to be in a chat group, could you recommend any that is safe? Thank you!

  9. Kristina Vukanovich says:

    Hi :
    I am new to this but I am looking for fibro friends too. I don’t have Facebook, maybe it would help?
    I was recently diagnosed with Fibro/nerve pain. Pretty isolating feeling. At least I know now what it is. Anyway, I enjoy reading your comments. You seem like nice people.

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