What happens when we run out of answers?
Where should we turn when our doctors don’t think a symptom is connected to a new drug? Where do we go to express our frustration? Who can we find who may be having the exact experience we are?
Support groups are like storms. We sit on the porch, we enjoy the cool breeze and the calm that exists while the storm brews on the horizon. And suddenly we’re caught up in the pouring rain and lightening and it’s all too much so we retreat inside.
Roughly two years ago I stumbled across the idea that maybe there was a Facebook group, or something that had to exist where there were people looking for new answers and treatment options.
At the time I joined about 4 groups, all specific to chronic migraine. I thought it was a wonderful opportunity to find support and see how vast this community really was. It was so much fun, I got to sit down and introduce myself along with my history of the condition.
Those introduction posts make you feel so welcomed and you find people who have tried the same things you’ve tried. People wanted to hear more about my ups and downs. People wanted to hear what I liked and didn’t about various medications.
And suddenly, people decided that I was wrong. This shift is bound to happen on anyone’s post sharing their situation. Suddenly people were angry. The second you express you don’t like a treatment that worked for them, they want your head.
Then you sit back, decide maybe you won’t interact as often… funny you came to a group for support and you didn’t find it. And you notice what people are sharing. People are posting their go to treatments and it consists of harmful combinations of medications, taken way too close. People are threatening their doctors.
Mostly people are crying for help.
I left those first support groups pretty quickly. I didn’t feel welcome and I didn’t feel like it was a community truly meant to uplift others.
After the new CGRP medications were released, a large support group formed there as well. This has been one of the most valuable groups, as with a new medication, we’re all lost on how it affects people. Finally there was this place full of people sharing their stories, asking questions, having people from all over the world with all sorts of types of migraine providing incredibly useful feedback.
We had people who understood exactly what we were going through. We had people on each of the medications, people who were new to migraine and people who had suffered for 40+ years. There were people wanting to learn more before trying the medication and people who had been in the clinical trials.
It was truly a dream when it came to the diversity and inclusion of so many people. People could learn from others the procedures necessary for getting a certain medication approved from insurance. People could find a quick answer as to if the side effect they were experiencing even had a chance of being related. There were medical documents and plenty of informational pdf’s answering common questions. There were polls designed for people to share their results from the medication. There were even live videos where doctors would speak and answer our questions. It was this huge resource pool that allowed patients to expand their knowledge and help make truly informed decisions.
Until, the people having success slowly started abandoning the group. No one was sharing their success stories.
It was only people who were still fighting for an answer. Angry people.
The support was leaving.
You’d have someone ask about managing a certain symptom or managing there medication and instead of people being supportive a fight would break out in the comments.
Suddenly the people that were left are the ones more interested in telling everyone that the CGRP’s are derived from a rat. It’s the people interested in telling everyone else that they are wrong.
Those interested in more positive and generally safe advice, were no longer getting answers because most members stopped replying.
Today, I stopped replying. I spent half of my day sharing different perspectives and talking to people about where doctor’s may be coming from when it comes to our side effects. I talked to multiple people about overcoming medication overuse headache and the steps doctors recommend. But the second I laid out the simple fact that at the end of the day, our doctors are more informed and we can’t take advice on the internet so seriously because some of it is dangerous, they came for me.
Because to them, medication overuse headache isn’t real. Funny, I’d have a lot of people happy to jump in and say migraine itself isn’t real.
But, today, I’ve left all my “support groups” because they aren’t support groups.
This is a learning lesson.
When we want support, what do we mean by support?
I certainly am not looking for people who are pretending they know best. We all recognize that there’s things we understand better than our doctors – we live the life, of course our understanding is better – but I could never sit here and explain how drugs interact for everyone. I could never tell someone to stop taking all their meds. Or that this is why this “x” is happening. I’m not a medical professional.
Unless these support groups have on call doctors, they should be a place to share our experiences and what we’ve been told, not to serve as medical advice.
All we can offer is our lived experience.
So, for me, my support? That comes from my friends and my loved ones. The people around me who may not even have migraine, but struggle with something else to the point where they understand the feelings I’m experiencing.
It’s the people who check in to see if I’ve eaten. It’s the people sharing what I’ve written because they think my words may help someone else. It’s my parents hearing all the horrible thoughts I have about my doctors and the medical system and them knowing I just need to say it out loud and then I’ll be okay.
Maybe one day I’ll be up to making my own support group. And if I did, it would be a safe place. It would probably be a lot like The Mighty. A place that focuses on encouraging others. Sharing positivity. Empathizing where we know we can, and letting others do that where we aren’t comfortable.
We all want to get our story out there. We all want to feel less alone. But the people who negate our experience, make places like support groups a less than supportive place.
But, in the end, support groups have proved to be disappointing. We already live with pain, we’re already angry and frustrated. That energy shouldn’t be pushed into a support group, because we all already understand that.
So now, I’m back to feeling like Green Day walking down the lonely road… the boulevard of broken dreams… away from a failing support group.