Dealing with Loneliness and Chronic Illness
The Loneliness of Chronic Illness: My Battle With Arthritis and Depression
The Loneliness of Chronic Illness
The physical toll was enormous. By the time I was 13, my elbow and both wrists fused in place. My knees could not bend past 90 and 20 degrees. I sustained significant damage to both my neck and ankles. I did not deal well with these changes.
If the physical pain was great, the emotional pain was greater. My body image and self-esteem eroded and I believed myself “disabled” to my core. It was extremely difficult to look at myself in the mirror. In conversation, I couldn’t make eye contact. I felt what I had to say was worthless.
I chose to deal with my problems by pushing others away, which felt easier than repeatedly explaining my illness. When I got my driver’s license, I started withdrawing from my family as well. The thought of caring for others was laughable, as I did not even like myself. My chosen path of solitude was not the best way to cope.
I continued to struggle in early adulthood. I was surrounded by friends, yet I didn’t feel as though I belonged. I didn’t feel attractive, so I didn’t date. I avoided groups at all costs to avoid my embarrassment. Hope was giving way to depression, and my plans for the future entailed no more than surviving the following day.
Here Comes the Sun
I learned of a support group for younger people with all types of arthritis. This was new to me, as I had never attended a kid’s camp or conference for people with conditions like mine. In reality, I didn’t want to go, but I forced myself. Fearing humiliation, I took the most difficult steps of my life walking from my car to the meeting room.
For the first few minutes, I was fixated solely on the facilitator. She was close to my age. Her physical deformities were similar to mine. But unlike me, the person I saw standing in front of me was a beautiful, confident, young woman full of love. I couldn’t believe someone like me seemed so “normal.” She had JRA, but it did not define her. Needless to say, I was love-struck by end of the meeting. We are still good friends to this day.
It was not long before my relationships improved and looking in the mirror became easier. I now knew an understanding person facing the same challenges. No longer feeling withdrawn, I sought to help others find what I was missing for so long – understanding support.
Things Have Changed, but the Need for Support Hasn’t
About 35 years have passed since my first night in the hospital. Clinically, much has changed. Diagnosis has improved, the name of the disease has changed to juvenile idiopathic arthritis (JIA), and new biologic medicines and disease modifying anti-rheumatic drugs (DMARDs) have taken the place of large sustained doses of steroids and other treatments that sometimes felt reminiscent of gold injections and voodoo ceremonies.
It is now uncommon for people to develop deformities like mine, but the physical pain persists, as do the emotional challenges. No one would question my parking in a handicapped spot, as they can see why I might need it. However some people who appear physically fine, but need the handicapped spot, are sometimes called on to explain, or are otherwise harassed. There are endless similar situations, such as the need to pre-board an airplane. Even some healthcare professionals can doubt people’s pain when it isn’t so visible.
I have learned that your medical conditions do not define you. It can be difficult to accept a life of living with a disease, but it is critical to adapt to your situation and build a strong network of support. Educate yourself and your loved ones. Learn about what you can do help yourself feel better.
Where to Turn for Help
If your world is turned upside down like mine was, know that you are not alone! I believe the best thing you can do for yourself is to find others facing similar challenges. Get to know them, and meet face to face if at all possible. No matter how difficult this is to do, it is worth the effort. You can meet others by attending educational events relating to your diagnosis or volunteering with an organization that serves people with a similar diagnosis.
There are numerous objective websites which can help you learn about the latest medications, how to manage a proper diet and exercise program, and other helpful information on topics like stretching. My favorite informational website for rheumatoid disease is rawarrior.com.
A New Perspective and the Arthritis Introspective
Six years ago I founded Arthritis Introspective, a 501(c)(3) charity which brings young and middle aged adults living with arthritis and their loved ones together for face to face support. We have created a place that is safe and understanding on the local and national level. All are welcome to join, regardless of when you were diagnosed and with what conditions like adult onset rheumatoid disease, lupus, fibromyalgia, and so forth. I created Arthritis Introspective, so that no one would have to live as I did for 15 lonely years. For more information, or to form a support group in your area, please visit www.arthritisintrospective.org.
Kevin Purcelllives in Tucson with his partner Becky and dog Eowyn. He is a glider-rated private pilot and an avid motorcyclist. Both challenging and adrenalin filled hobbies require total concentration for safety especially for someone with a serious disability. Like starting Arthritis Introspective, Kevin believes that learning and adapting to complete what we want or need to do make life worth living.
Video: The Faces Of Chronic Illnesses
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