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Feeling Lonely

Posted , 4 users are following.

robin52198
robin52198

Feeling isolated. My family and friends don’t understand symptoms of ME/fibro. It seems my personality has changed.I have become more sensitive, and fearful that the few friends are. Distancing themselves. Anyone else feel this way?

0 likes, 6 replies

6 Replies

  • KPD
    KPD robin52198

    Posted

    I'm so sorry to hear that you're family and friends do not understand. Maybe you can find a video or book for them to take a look at so they can get a better understanding of how debilitating this illness can be! My personality is definitely different when I'm feeling exhausted, not that uncommon. Are you homebound or can you function some? Do you have both good and bad days/periods or are you symptoms constant? I think all of us (at times) have felt lonely and isolated. Hope you have someone in your life that is understanding! 

    • robin52198
      robin52198 KPD

      Posted

      Yes things have improved. After being bedridden for 2 1/2 years I started having days i could walk(very slow) but walk !  I  live in the MN and about 20yrs go there was a weekly support group.  It really made a difference. People understand and we shared useful resources. I miss that group am so grateful to find my people.
    • robin52198
      robin52198 KPD

      Posted

      Thanks Kpd. I am exhausted now.hope to reconnect soon. : )
  • helene51978
    helene51978 robin52198

    Posted

    Sorry Robin, I have the same problem and I’ve been diagnosed with ME/CFS for eight years. Family really do not understand, because some days at least for me can be really good. But then there is the “fall” or complete stop to my energy. I feel like it’s never gong to end and I’m not going to get through it. Friends are few and far between. I have no answer. However, there are doctors who are willing to talk with your spouse and family if they are willing. I’ve never seen a video, but perhaps there are some. Good luck. Hopefully happier times too. 
    • robin52198
      robin52198 helene51978

      Posted

      I have some very good days which I think it confused many people. They don’t understand that some days I function well- they don’t see me whenwhen I am sick. So grateful for everyone’s replies.
    • Solsikke
      Solsikke robin52198

      Posted

      "they don’t see me when I am sick." This is often a problem for understanding this illness.

      I do not know where you live, but there are many ME online help groups and some of them have material which explains ME. This often helps.

      To become more sensitive and fearful when you are more vulnerable that you used to be is natural.

      Friends is a problem. They live at another pace, and to some extent in another world. Only the best of friendships can survive this, but there is the option of finding new friends who live at our pace, for reasons of ME or other illnesses.

      Adaption is the key. Good luck!

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