I am a family member of someone with chronic illness and I have had the privilege of becoming acquainted with the chronic illness community in my personal and professional life. Online support for chronic illness is really an amazing thing when used correctly. There are communities on Facebook, Instagram, Reddit, and several non profits offer online group support or chatrooms. Recently, I have been developing my social media presence for my practice. I am in the process of developing content for the chronic illness community and their caregivers. Possibly some pictures of my french bulldog napping?

Amazing for your mental health!

Throughout this social media creative process, I have discovered so many incredible resources. It’s amazing that conditions like chronic fatigue and Lyme disease are getting the public recognition they deserve. This is a huge win for not only finding cures and treatment for illnesses, but supporting the people who have been diagnosed and the people who love and care for them.

During my clinical internship in graduate school and after graduate school, I facilitated support groups for people impacted by cancer. I worked with several different populations, including women, men, individuals who had lost a loved one to cancer, and parents with a diagnosed child. I loved the camaraderie that developed in the rooms and watching these individuals make meaningful connections, despite unsettling conditions. The group allowed people who had suddenly become different from their “normal” peers to meet individuals who were just like them and could share in their triumph, joy, and sorrow. I feel so lucky to have witnessed this work happening in the rooms.

But, there was always this issue of how can we get people here who are struggling to eat, stay awake, and make it to treatment. Attendance would fluctuate and I could tell it was difficult for some individuals to make it to group each week because of their health. Well, it’s 2017 (almost 2018, scary) and we have the internet! And oh my gosh, so many people with chronic illness are using the internet to find support and answers to their questions. Instagram, Facebook, and Reddit are swimming with people offering support and advice (some good and some down right dangerous), but the support is there.

Each time I interact with these people online or witness their exchanges on a photo or in a forum, I have conflicting feelings. The good stuff is really good, but the bad stuff is just so bad. I really like that people who are home or hospital-bound can find online support for chronic illness, interact with other humans, and have meaningful conversations. I do not like the impact some of these interactions can have on individual’s mental health. Too much screen time and social media has been associated with decreased self-esteem, anxiety, depression, feeling isolated, feelings of inferiority, poor concentration, and addiction to social media. The biggest issue with social media is our ability to make comparisons between ourselves and the perfectly crafted images we see on the internet. Among chronic illness populations, dangerous comparisons happen in two ways: individuals may compare symptoms in an effort to seek reassurance that they are sick or even more sick than their fellow spoonies or, individuals may engage in medication protocol comparisons. It is easy to allow your illness to become your entire identity if you spend too much time discussing it.

Life is about balance though, right? I think online support groups and social media can be an excellent supplement for people impacted by chronic illness. So, here are some tips to ensure that your time spent online is positive and effective!

Online Support For Chronic Illness Tips

– Lost In Translation: Reading responses on a screen allows some language to get lost in translation. Be careful not to assume what others are saying and understand that not everyone communicates online in an effective manner.

– Make Sure The Space Is Safe: People with certain diseases that are often stigmatized, like AIDS or addiction, may find online support a more welcoming space to discuss their issues. The anonymity provides a safe space to discuss socially taboo issues. Individuals may be more willing to share information. Be cautious of sharing too much personal or identifying information over the internet with individuals you don’t know. Unfortunately, the majority of these groups are not moderated and anyone can join. Not everyone will be there for the same reason.

– Do Not Accept Medical Information At Face Value: In chronic illness communities, individuals tend to discuss and compare symptoms, treatment protocols, and medications. Your disease is unique to you and it can be dangerous to accept medical or treatment advice from individuals on the internet. Always bring new information to your medical team and conduct thorough research before trying anything.

– Be Certain It’s Helping: I have seen online communities provide individuals with community and strength, while others get wrapped up in the constant discussion of disease symptoms. This may cause anxiety and depression to increase. Continuously how the online community is working for you and don’t be afraid to walk away if it’s not beneficial.

– Online Activity Does Not Replace Physical Contact: It can be very easy to get swept up in the chronic illness community online. Individuals who feel isolated in their own lives may find solace in this new welcoming community. Online communication cannot substitute all real human contact or time spending outdoors. Make sure to monitor your online activity and engage in the world around you as well.

Are you home or hospital bound because of your illness? Are you using online support for chronic illness? Online counseling may be a great addition to assist you in managing your chronic illness. Contact me and we’ll see if it’s a good fit!