Online Support Groups: An Untapped Resource

Living with a chronic or undiagnosed disease is a grueling, endless battle that leaves you clinging to the remnants of your sanity. The symptoms are incapacitating, the financial strain is crippling, and the emotional toll it takes is a beast unlike any other.

The emotional destruction is almost a rite of passage for the chronically ill patient. You may turn to family and friends for support, but quickly find that no one understands your plight. During your darkest moments, their indifference can feel like a betrayal. Where do you go from there?

Online support groups offer a shining beacon of light that surrounds you with understanding and comfort. These websites provide safe havens where people come together to support one another, offer advice, and connect you to additional resources. In short, it is a warm embrace that yields validation and hope.

To find an online support group, you should first look for groups that associate with your specific illness:


Next, try exploring groups that cater to chronic or rare diseases in general:

  • Facebook has thousands of support groups for those with chronic illnesses that offer support, humor, and friendship. The Rare Diseases United Foundation also has a Facebook group for every state. Closed groups are often closed for privacy reasons, but you simply need to ask to join.
  • Organizations like U.R. Our Hope, Rare Genomics Institute and Global Genes can connect you with resources and advocate for rare disease patients.

Finally, take to social media:

  • Connect with as many organizations as necessary. Many organizations maintain several accounts including Twitter, Facebook, and YouTube. Use all of them to your advantage.
  • Be proactive. Sign up for newsletters, send emails, tweet, and call. Ask questions. Do not be silent.

Unsurprisingly, my own experience with support groups has been invaluable. The Ehlers Danlos subreddit, for example, has always been a safe space in which I could ask questions, garner support, and learn more about EDS. I also shared my story on RareConnect, where readers have welcomed me with open arms. Similarly, a Facebook group called Chronic Illness Support for Crazy Chronic Lives has been an endless source of warmth, support, and laughter. It was also an Inspire user that first told me about the Marfan/TAAD panel. And thanks to the advocacy of U. R. Our Hope, I have gotten further in my diagnosis journey than I ever thought possible.

Chronic and undiagnosed illnesses generate a plethora of physical and financial hardships. When your struggles are emotional, however, online support groups can be a respite for the heavy-hearted. When you feel broken, abandoned, or overwhelmed, help is just a few clicks away. It’s time to log on and let it all go.

Resources

Chronic Illness Support for Crazy Chronic Lives. (2017). Retrieved from https://www.facebook.com/groups/377634085727891/#_=_

Chronic Illness. (2017). Retrieved from https://www.reddit.com/r/ChronicIllness/

Global Genes – Allies in Rare Disease and Genetic Disease, genes, undiagnosed patients. (n.d.). Retrieved from https://globalgenes.org/

Rare diseases support communities – Inspire. (2017). Retrieved from https://www.inspire.com/categories/rare-diseases/

Rare Diseases. (2017). Retrieved from https://www.reddit.com/r/rarediseases/

Rare Genomics Institute. (2017). Retrieved from http://www.raregenomics.org/

RareConnect. (2017, January 30). Select your community – RareConnect. Retrieved from https://www.rareconnect.org/en/communities

reddit: the front page of the internet. (2017). Retrieved from https://www.reddit.com/

State-Based Facebook Groups – Rare Disease United Foundation. (2016). Retrieved from http://rarediseaseunited.org/state-based-facebook-groups

U.R. Our Hope – Assisting the Undiagnosed and Rare at any age and any stage. (n.d.). Retrieved from http://urourhope.org/

Undiagnosed medical problems support communities – Inspire. (2017). Retrieved from https://www.inspire.com/categories/undiagnosed-medical-problems/

Published by

Deanna Brownlee

Deanna Brownlee

My name is Deanna Brownlee, and I have an undiagnosed disease. For 10 years, my unidentified illness has yielded only futility and heartbreak. As much as it has stolen from me, however, writing has always remained by my side. I am truly honored to be part of the CrowdMed team.