Dealing with loneliness when you have any chronic illness, including ME/CFS and Fibromyalgia, can be a big problem. These are some great suggestions for coping with those times you feel lonely.
These suggestions were originally submitted by readers of the OzME mailing list, others have been added over time:
The worst part of CFIDS for me is the loneliness. I’m 29 and I’m as inactive as my ailing 84 yr. old grandmother. I can’t work or go out like I used to, and my husband left me (which is actually a blessing) last year after I got the prognosis from my doctor.
I have great friends who have stuck by me through thick and thin, and for them I’m grateful. When I have the strength, I go out with them, but I can’t go out when I’m in bed 23 3/4 hours a day! It’s hell being in bed, day after day. So, I’m making a plan of attack to deal that special lonely feeling when you feel too sick to get dressed but wish for someone to lay on the couch with you and hold your hand.
- Get on the Internet and go to one of the chat rooms. Become e-mail pen pals with people from different countries.
- Set up a local CFIDS phone network and call other CFS-ers who are also stuck at home and by themselves.
- Have a volunteer from church or synagogue visit and spend a few hours.
- Invite a friend over to watch a movie. It’s hard to have more than one person over at once because it’s too overwhelming when I’m really bad off.
Suggestions from Amanda Baggs:
Make an “I’m not alone” book. Print out or photocopy articles, stories, pictures, or emails, that make you feel less alone. Examples include letters from friends, articles by other PWCs, articles by other people who think like you do or understand you, and so on.
If you’ve got in-person friends, you might even be able to get them to put messages on an audio or video tape for you, so that you can replay it and know that people know you and care about you. For the printed things, you can stick them in a binder or folder that you keep near your bed or couch, or wherever you hang out when you can’t get around much.
Then, when you feel like nobody understands and you’re completely alone, you can pick up the book and see that you’re not. Even if your attention span is fried and you can’t read it, just the knowledge that there are things in it that show you’re not alone, can help.
These suggestions about being lonely were contributed anonymously:
I write – diaries, fiction whatever. I unleash the feelings that I normally would use with others, onto paper. I keep a notepad by me in bed because I’m always thinking of things to do (not that I do them all) and things to write up in the diary.
I listen to talk-back radio.
I read short real life stories – short enough so I won’t lose concentration (2 magazine pages maximum).
Additions to this page are welcomed! If you have any tips for coping with with being lonely, please contact me or leave a comment below so I can add them.
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