Reaching Out for Support with a Misunderstood Illness

I promise I have some new posts in the works! Meanwhile, I just had to share this excellent post by a good friend of mine. Please read, share, and follow her blog if you haven’t already. I promise it’s well worth the energy! Hugs to all…

A rainbow at night

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you, for which patients have to help each other find physicians. Who have had to FIGHT to find any support because the public is so DISASTROUSLY MISINFORMED about the true nature of their illness. Who have had limited or no help from the loop of organizations that would otherwise smother you in understanding and compassion had you gotten a more acceptable or understood disease. I wish I knew of the other people whose diseases didn’t have a cure, and who had also exhausted all of their treatment options–treatments other sufferers and tiny organizations of doctors have had to figure out, mind you, because if…

View original post 1,019 more words

Advertisements

8 thoughts on “Reaching Out for Support with a Misunderstood Illness

  1. Rainbowatnight’s post really hit a nerve with me. Support for people with M.E. is hard to come by. I have tried several avenues myself (online for obvious reasons 🙂 )and run into many issues, as mentioned in the blog. At one point, I joined a facebook M.E. support group. It was very disturbing to find many participants writing about depression and suicide! Not the support I was looking for!

    Doc. M.E. – thank you for being the pillar of strength and reason that you are! I will be contacting Rainbow with the hope that I can give her some support, And please, do not hesitate to contact me if you would like and feel up to it. fmulsmul@bellsouth.net

    Fern

    • Dear Fern – Thank you for the kind words and support. Kit (rainbowatnight) is definitely a great person to get to know. I follow her on Twitter as well as reading her blog, and have really enjoyed the friendship that has developed.

      Illness really can be extremely isolating. While this applies to any illness, it definitely seems worse for those of us with unheard of or misunderstood conditions. I’m sorry your experiences with so-called ME groups have been so similar to my own. I long for the day when this disease gets proper recognition (completely separate from the CFS fiasco) so that we can finally begin finding the support (and eventually answers!) we so desperately need. I think right now, blogs and/or Twitter are our best options, because they give us more control over who we interact with than an open group does. Thanks again for the support. It’s one of the things that makes keeping a blog worthwhile!

      Take care…

      • BROOKE. I wanted to come and comment here, first, before I set about my list. It was so touching to come here and find your sweet words about me. ♥ I’ve really enjoyed our friendship, too, and thank you so much for sharing my post. Similarly, I think I’m going to put your post about caring for people with severe M.E. on the side of my blog with a few other relative links.

        Hoping today is tolerable for you,

        Kit

      • Aww, thanks, Kit! I appreciate you sharing my link as well. It’s great to have the ability to network with other like-minded bloggers and share important posts. It saves energy and gets solid information out there all at the same time! Thank you for your friendship as well. It really means a lot to me. Hope your day is going well! Hugs.

Something to say? Share away!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s