By Christina Coates, HODA Board President
The advent of social media has been both a blessing and a curse to patient support groups. As the leader of a relatively new rare disease patient advocacy group, I have a difficult time conceptualizing how pre-social media support groups were able to locate and engage their people. Social media has given me the easier path to finding patients through other groups, and just by simple hashtags.
I remember researching my first college paper. It was a task that needed to be scheduled. I would take the night off of work, drive out to the bigger neighboring city’s public library, and read publications on microfiche or microfilm. I knew how to load and search on these strange contraptions. The Dewey Decimal system was taught to us in elementary school in our ‘library’ classes. It was a feat to find the books that you needed, as they always seemed to be checked out. And then, suddenly, the internet. Smaller socializing tools came online. AOL had groups you could join and talk with people from all over the world. It was truly marvelous. Until it wasn’t.
Since I have taken my rare diagnoses seriously, I have found and joined several related Facebook groups, mostly to lurk and learn from the experts of the diseases (the actual patients). When I was diagnosed with a Sporadic Cavernous Malformation, the doctor who was the lead physician on my case downplayed it so well that I didn’t even bother to look for support. Even the actual brain surgery was described as “easy”. Once home from the hospital, I googled “Cavernous Malformation”, and came across the (formerly known as) Angioma Alliance. I reached out and volunteered with the national organization within just a day or so of being released from the hospital.
Timing is everything with patient support groups
In hindsight, maybe in this instance, social media was a mistake because it was almost certainly too soon for me to be volunteering this way. After a few weeks, I had my first meeting with a few local folks, and a representative from the Alliance to form the Arizona Chapter of the Angioma Alliance (now known as The Alliance to Cure Cavernous Malformation). We were starting a local patient support organization chapter. I couldn’t speak without sobbing. I never wanted anyone to go into brain surgery for this rare disease without fully understanding what it entailed. Informed consent, if you will.
Once our local chapter was formed, the Alliance chose Megan Loden to be the Chairperson, and I was chosen as her Vice Chairperson. Megan is a mother to a set of twins with the genetic form of Cavernous Malformation. One daughter had brain surgery a few months ahead of me, and the other was just after me. Even now, years later, I joke with the twins about our race to the bottom. It seems like if one of us has to go get new images of our brains done, we all have to do it shortly before or after. have teased Megan that a criteria must be made for the competition, and the winner (?) should receive a trophy with the poo emoji at the top, instead of the plastic sports figurine that would generally rest upon the pedestal. Because that is what neurologic disease is. A race to the bottom.
Patient support groups build friendships
After ten years of social media abstinence, I joined Facebook, for the sake of the community. After all, the Vice Chair doesn’t have the luxury of pretending that they have no responsibility to the group. Megan did the lion’s share of the organizing, and I would check in with the group, try to engage our fellow CCM “Warriors”, and be the ‘Hype Man’.
It was a role that wore me down at times. But I enjoyed working with Megan. She and I became close friends, and remain close. It is a rare day that will go by where one of us hasn’t contacted the other. She and her family are one of the only things I am truly grateful for on this journey. She taught me that it was ok to feel angry and resentful for as long as I needed to. Megan quickly became more than a friend. She was also a mother figure that I yearned for that I could cry with. She is a central part of my life, and I hope that I am that to her as well.
Giving back is the cornerstone of advocacy
My HOD diagnosis knocked me down. I recognize my fear and denial in my earliest posts in the HOD patient support group on Facebook. I look back now and have love and compassion for the person that I was at that time. The group was so accepting and kind to me in the beginning. I came in and immediately asked “what can I expect from HOD?” I was so panicked, that I didn’t even think to use search tools to see what has been discussed before. I just assumed that the people in the group could easily share with me. Almost two years into this lifelong relationship, I know for sure that no one could easily tell me what I wanted to fight and rebel against.
I can now see through nuanced eyes more clearly. When a newly diagnosed patient or caregiver finds HODA’s contact information, they tend to fire off an email. When those emails come in, I read the fear and denial in their words. I try to softly encourage them to seek out and join us and the HOD support group on social media. First and foremost, I ask how they are handling the diagnosis. I tell them to not try to do this alone. I know how I would have liked to have been treated, had HODA existed when I was diagnosed. This is the beautiful side of patient support online. The charity of the existing group to help the newly diagnosed to come to terms with the worst news of their lives returns my faith in humanity.
It’s not all rainbows and sunshine
In several of the groups that I lurk and learn in, I have seen some of the more senior diagnosed folks degrade the newer patients for asking ‘dumb’ questions. The myth of the keyboard warrior is not so much a myth in some of these groups. I have seen folks get intimidated and stop participating. I have seen folks fire back and threaten to break off into their own group. I’ve also seen first hand (and have heard from others) that inappropriate direct messages go to newbies. That one shocked me a bit. I have experienced harassment both socially and in a professional environment.
The last place that I expected to be harassed was in a Facebook support group for a rare neurodegenerative disease. In fact, one of the jokes that I made about having a broken brain was that I would finally stop getting harassed. Unfortunately, that was not the case. I thought the person was truly trying to help me get through this without un-aliving myself. I knew that was not the case when I saw a DM flash on my phone asking me to “send pics”. It was not flattering. It made me feel like giving up. I am glad that I didn’t.
We want to offer the best for HOD patients and caregivers
I have come to realize that the farther that some of us get on our journeys, the more we forget how it was on day one. Whenever I see a new person pop up, I put my frame of mind back into that first day. I remind myself how utterly terrified that I was of this unknown disease. I all but checked myself into a memory care facility and gave up trying to lead a normal life. What I have learned is that we are all fragile beings. We need the true support and love that these communities can offer when they are at their best. We don’t need the snide comments, the harassment, or the flippant attitudes that can sometimes permeate these good and valuable resources. Empathy should be a core goal in patient organizations and it most definitely is here at HODA.
We now have monthly virtual support groups for both patients and caregivers. We have officially launched our ambassador program for new patients and caregivers navigate HODA, physical, and mental health care, making connections, and more.
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