How My Rare Disease Support Group Failed Me

Back when I was diagnosed with a rare genetic disease, Facebook didn’t exist. For better or worse, I didn’t have the digital community millions of people now turn to daily to converse about the countless number of medical conditions that exist. I was first able to get a Facebook account when I was headed to college, and can recall finding a social network there for my illness around that same time. This community, like most support groups, was started by someone looking for a place to talk with peers and alleviate the common isolation that comes with having a rare disease. Today, it is made up of over 15,000 people from all around the world — people with the condition and many family members, too.

I did not spend much time in this community since I chose to disconnect from my illness in the initial years following my diagnosis. My family members were the only people who knew its severity. I didn’t even want to acknowledge its incurable, degenerative nature myself. It’s fair to say I knew nobody else with this disease and that caused me to feel alone, but also allowed me to effectively disassociate from it.

On the occasion when the reality of my diagnosis would hit me, I’d shyly enter into the group. However, I always found it made me feel worse, rather than better. I would burst into tears after reading a post from someone not much older than me whose condition was progressing fast. People compared notes about who had it worse. Others wanted to know about how much time was left for them or their child. While I was largely suppressing my pain, this type of conversation exacerbated it.

I made a decision not to check that group for a long time. I actually left it altogether. Not as an act of ignoring my condition — in fact, I deliberately spent those years becoming more aware and accepting of my disease — but in an effort to avoid the venting I noticed taking place in it.

A few months ago, I decided to rejoin. After years of addressing and healing the emotional wounds surrounding my illness, I figured I could handle it. I was curious if the conversations were the same — more so, if my perception of them had changed. I wondered if my new outlook on life with an incurable disease would allow me to see the support group dialogue differently.

My suspicion was confirmed when I started to get notifications about group posts. First, I noticed my perspective had changed; I was able to read difficult posts without crying or feeling my stomach turn upside down. Second, I noticed that the group talk was mostly unchanged. I saw many posts that prompted a flurry of comparative comments — things like, “How quickly did you lose your ability?” Or, “At what age did you stop driving?” Sometimes I would read them and move on with my day. Other times, I’d chime in a gentle reminder not to compare; this disease affects everyone differently, and contrasting your story with others will only snowball your pre-existing stress.

A couple of weeks ago, a post from the group popped into my newsfeed. Someone was upset. They felt attacked and judged by others in the community. Stating that they’d come there to express a certain challenge, they now wished they never had because others had responded with vicious negativity and accusations. I’d witnessed a few others who wrote they were leaving the group altogether because of similar pessimism.

I decided to post my observation and made sure to do so without accusation. I noted this was not the first time someone had posted this kind of feedback in the community; that someone who was there for support felt group members had provided the very opposite. Shortly after I chimed in, a few people responded. They said that they had felt the same and thanked me.

It wasn’t long until the group moderator responded, too. What happened, however, was not what I expected. They told me I was wrong. They demanded the group was supportive. Without any discussion, they immediately deleted all responses other than their own and disabled further commenting on my post. They ignored feedback that could have served as constructive. Most importantly, they failed to provide others and myself support on a matter of concern.

Here’s the thing: I strongly believe in support groups. I believe in their power. So much, in fact, that I facilitate one myself. Support communities address systemic issues that plague collectives and could not otherwise be resolved individually. They provide an environment to safely lean into a challenge and work on it together. Part of what makes the most effective support groups successful is their ability to move through distress, rather than deny or dismiss it.

Defining the mission of a support group is critical. Weighing one’s condition against others contradicts the nature of community care as it individualizes a problem. Peer facilitation is, therefore, a cornerstone of effective interpersonal support. Having someone designated to redirect conversation when it becomes destructive is essential. Discussion is going to lean toward darkness when its subject matter is inherently difficult. When a peer can guide others back toward light, it serves as not only support, but also resilience training. If a facilitator cannot hear the concerns of their members, they have lost their ability to properly offer support.

When it comes to something as profound as a life-altering disease or disability, we must learn to listen. Conversation must turn from venting to valuing emotional well-being. We should strive to be comrades rather than commiseration buddies. Even when someone is angry or upset, we must learn to see these as signs of sadness or anxiety and offer a virtual hand. Otherwise, our support groups will inevitably fail to be supportive at all.