The Loneliness of CFS Part II

Last week, I discussed the feelings of isolation and depression affected us as well as how disease affecting the central nervous system affects relationships and family dynamics as well as judgement from authority figures. I also discussed how more research needs to be done into these factors so healthcare professionals as well as families are better equip to care for those who struggle with CFS. The following are factors which would be helpful to those of us feeling the loneliness and isolation of chronic fatigue syndrome

Contact with the outside world. I believe is the most important. It has been for me, anyway. Facebook and other social media, well, I’m not sure I would do very well without them. Because it is hard to get out for very long, Facebook has been instrumental in keeping me in touch with my friends. Many people don’t consider Facebook friends, “real,” friends, but when one is restricted in socializing, for me, it is a godsend. Church has also been helpful. Anytime you can get out of the house, do it. Even a phone conversation is helpful. At least there is some interaction. For me, just a conversation with a good friend is helpful.

Cognitive-behavioral approach to illness. This involves things like talking your problems out and discovering things about yourself you may have never realized and learning how to cope with and modify certainly behaviors. This helps the healing process. It also involves journaling and putting your innermost thoughts on paper. It is cleansing, and, if you go back months later and read what you have written, you will see where you were at the time as opposed to where you are right now. I noticed this when I wrote my book. Some months after it had been published, I read it. I noticed I had really grown and healed since writing it. I was amazed at how much I had healed and matured.

Family support is also paramount. These are the people you have known longer than anybody else, and they are a very important part of your life. They are the ones who should never turn their backs on you. Other than my mother, I had no family support, and it hurt me deeply. I never got a phone call asking how I was or if I needed anything. It was all about them. Beckie couldn’t do certain things anymore, so they decided not to have anything to do with her anymore. It was very hurtful to discover what kind of a family I really had. Discovering your own familys’ true colors is not easy, but it generally turns out for the best, because what you do discover is who your friends are. Many times, your friends turn out to be even better than family. They become your family.

Empathy from others. Those who struggle with chronic illness need to know others truly care about them. A kind word goes a very long way. Just a call to say, “hello, I am thinking about you,” makes the day brighter. Or, send a nice card. Just knowing someone is thinking of you makes our day happier.

Benefits of peer counseling. It can be helpful to share with others who are in the same boat as you. You can identify with them and they you. Great support and good friends can be found here.

Healthcare providers who will provide care and support. I believe this is very important. We need to have trained professionals who have learned about our illness and who understand how real it is. There’s nothing more hurtful than for a doctor, nurse, or therapist who belittles our situation. They need to have real knowledge of CFS as well as counseling skills to help us with the mental health issues which go with it.

Religion/Faith and spirituality. More than anything or anybody else in my life, God has been the one who has gotten me through these past sixteen years. I believe God has brought all the wonderful people in my life to me. He has brought the people I have needed into my life through my church and through me community. I couldn’t be more grateful.

There is a lack of investigation about the loneliness of CFS. There would be great benefits from studying this. They would include:
1) Finding out if well managed and prolonged social support would be helpful with symptoms of pain in CFS?
2) Would being in support groups offer the same advantages as non-CFS groups?
3) Would online support groups offer the same benefits as in person support groups?

There was a study conducted which showed people who were more open to experiences were more accepting of their experiences in dealing with chronic illness, resulting in a much lower pain perception. This is true of myself. I am not so open to different experiences and this has really hindered me in how I deal with CFS. I now realize my anger and frustration comes from not going with the flow and from trying to control my illness. I can’t control it; I can’t control others not being kind and who aren’t willing to accept CFS being part of my life and how it affects them. This has been an eye-opener for me.

Finding others who are in the same situation as you, however, can make you feel less alone and less different from the rest of the world; it can help rid you of feelings of isolation and loneliness. It is necessary healthcare providers study and understand the feelings of isolation and alienation CFS sufferers experience. We need compassion from those who care for us just as much as those who suffer from cancer or any other illness. The need for compassion is universal.

Well, that is all for now. As I said last week, I will be taking a few weeks of to relax and regroup. I will, however, be checking in to say hello, as I always miss you during these hiatuses I sometimes take. I love you all!

Love & hugs,
Beckie

http://beckiebutcherwrites.com

youtube.com/watch?v=Y0aEcnleBOE

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