Living at home and sometimes going weeks without leaving the house, my illness can be very socially isolating. While this isolation is experienced as a literal physical separation, it is also a feeling of being out of sync with the rest of the world. I don’t move at the same pace as those around me and it often feels that the primary concerns I face differ as well. How do I overcome this feeling? Foremost, I have come to realize that while isolation is a physical state, it is also a mental state. When I am feeling particularly down and fatigued I feel more isolated, but the reality is that during those times I have not actually lost friends. Rather, I have lost my motivation for being around people or I am feeling misunderstood and different. For a short time I think it is ok to indulge in that feeling and give myself some space to feel bad about having a chronic illness and facing unique challenges. The rest of the time, I need to get over myself and acknowledge that life could be much worse and that I do have friends who genuinely care about me and empathize with me although they don’t face chronic illnesses themselves.
I have also learned that trying to hide my illness for fear of being treated differently is a mistake. Back in high school I had an experience where I told a friend about my illness and they started treating me differently. All of our conversations revolved around my issues and me because he felt the need to shield me from his personal problems, which he believed paled in comparison to mine. This experience really scarred me and has made me extremely cautious about whom I confide in and when. Over time, I have come to realize the more often than not, people have been accepting of my illness and it hasn’t made them treat me differently. I used to spend so much energy fearing being judged that I tried to act like I wasn’t having a hard time with my illness when I really was. With that approach I cheated myself out of getting support that could have brought my friends and I closer and made it more bearable to be at college, a difficult environment for people with my condition.
With my most recent downfall, I have lost my ability to be selective about whom I tell because I am out of school. What I have discovered is that people have responded positively to me and made an effort to reach out to me. If people are going to treat me differently because of my illness then they are not people I want as friends. I don’t like it but my illness is part of me and for someone to be my friend they need to accept the whole package. I will not be ashamed of my condition; it is not my choice. If anything, I want to be surrounded by people who see my strengths and value me for the accomplishments I have made and will make despite my challenges.
Some questions to consider:
How do you cope with feelings of isolation?
How do your friends help you with your struggle?
Has a friend ever treated you differently as a result of chronic fatigue syndrome and/or fibromyalgia?
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