The Value of Facebook Support Groups for Those With Chronic Illness


I am part of many Facebook groups dedicated to Ehlers-Danlos syndrome. It is great to have a community of people who have been through the same issues as yourself to turn to. I often read really sad posts about how many people have loved ones and relatives who either do not support them, or just don’t understand what they are going through. These posts made me reflect upon my own life and the people I have surrounding me and I realize I have taken these people for granted.

My mother is my biggest advocate – she has always fought for me even when I felt like throwing in the towel. She has always believed everything I tell her without question. There was a time when I literally began to think it was “all in my head” because that is what doctors impressed upon me, but my mother never once gave in to that thought.

My brother is my truest friend – he makes me laugh when I am sad and though he (and no one) can really understand the things I go through, he makes a serious effort to try to understand without judgment. He always has my back no matter what I am going through.

I am lucky to have friends who basically ignore my illness and see me for who I am. My friends are always accepting of any accommodations I may need, even when I am not. They have visited me in the hospital even though it makes them uncomfortable to be there.

I also have a church community who is always pulling for me and really want the absolute best for me. I have made some wonderful friends of older people who know what it’s like to have their body fail them as I do. All in all I have a very strong real-life support system.

When I see posts about people not being supported by their loved ones and friends, it makes me deeply sad for them. I wish I could make the people in their lives understand and accept them the way I am accepted. I never really knew I took that part of my life for granted or how lucky I really am. I normally would never categorize myself as lucky, but in that regard I definitely am.

Being part of Facebook groups can help people connect and it can also show some stark differences in our lives and make us truly appreciate things we didn’t even know we should be appreciating.I know now I will never again take the wonderful people in my life for granted. I will be truly thankful every day because I know how different my life would be without that support.

This experience has also made me see the true value of being part of an Ehlers-Danlos (or any other physical/mental illness) Facebook group. These groups are comprised of people who have been in similar situations, people who truly do understand exactly what another is going through. Some people don’t have a solid support system in their life apart from these Facebook groups and we are all truly lucky to be living in an age where online connection is so easy. Facebook groups have their bad points as well, but when it comes to finding a community of like-minded, like-bodied people, they are fantastic.

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Thinkstock photo via ponsulak.

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