"YOU should join a support group," they all say with great certainly in their voices as if this is the holy grail of solutions that everyone has tried but ME.
The same recommendation was given to me at different times from a variety of people who don't know each other. A physician, a friend, and a family member all made the same suggestion using almost the exact same words.
I wondered to myself if any of them has ever actually joined a support group. Is it possible that this suggestion just a default recommendation because people have no real idea what to say or do so they fill the time and space with well-intentioned platitudes, activities that sound helpful, and placating half grins? Is it possible that authentic support happens in any of these groups or do people simply repeat the same well-intentioned phrases over and over?
Not long after the diagnosis, I decided to try a large, online support group to find out if there could be any value in the support group experience for me. This particular online forum is used by thousands of people with rheumatoid arthritis. Naturally, because I value authenticity and transparency (deliberate sarcasm), I joined using a pseudonym, changed my location, and uploaded a photo of a well-known piece of artwork to complete my user profile.
Reading the posts from users, the content of the online posts and user interactions was a strange cross between the familiarity and mundanity of Facebook, the personal introduction on a dating app, and the symptom or medication checklist at the registration desk in an urgent care office:
"Hi. My name is Patty. I live on a ranch in Montana where I have lived all my life. My days are spent feeding the livestock and watching storms roll in. I am RF+, CCP+, RA on MTX 15 years."
"Nice to meet all of you. I'm Dave. RF+, CCP-, RA, newly diagnosed. Retired firefighter. LA Kings fan. First infusion next week."
Each post was a strangely intimate snapshot of the person behind it and yet each one delicately balanced so as to not shift the post too much in any single direction.
Other posts, many of them in fact, did not involve introductions, but detailed the pain levels of the communicator.
"Rain produces pain. Achy joints today. No energy to do anything."
or
"I overdid it with the gardening. It needed to be done but I am so sore. So much pain."
or
"Nasty flare. Can't get it under control."
Each post, every communication, was about the pain whether the person was actively seeking care or already under the care of a rheumatologist. Of the hundreds or thousands of posts that I read, none said, "HEY, I am pain free! I remember the days that were painful, but those are all in the past now!"
None of them.
I decided that I needed to engage with the people behind the posts--that I would certainly get more out of the experience if I participated more actively.
Over the course of weeks, I began to reach out to people and interact nightly on the forum. Still, the posts were largely formulaic. And my responses began to be formulaic as well.
"I'm sorry you don't feel well," I typed.
"Hope tomorrow is a better day!" I typed with a smiley face.
"Wishing you relief tonight!" I typed with sympathy.
"Maybe call the doctor again?" I typed, trying not to advise.
It wasn't that the people weren't happy, grateful, contributing members of societies around the world. Each person seemed to live and contribute in many ways.
One woman made homemade soup and routinely posted details for each batch of soup from the ingredients to the cook times. I could almost taste the wild mushroom rice and carrot soup she touted one day. She had made it despite the pain and exhaustion. Long cook times had allowed her to pace herself.
Another contributor was a mail carrier with 28 years on the job. He detailed his need for pain relief each day after work so that he could return to the same duties the following day. Many of his posts included his retirement date as the goal. After reading any of his messages, I wondered how he would fare the following day let alone more than 700 remaining days of mail delivery before he would cross the retirement finish line age.
So many intensely personal stories.
Some contributors answered medication questions and dosage inquiries to a point that it was uncomfortable to read them. The medication commentary was extensive including some piling on with some medicines and heavy favorites in other cases, all without any personal medical history, risk factors, or other context other than delicious soups or daily work struggles.
Predictably, I stopped using the support group app because I ran out of ways to tell people how sorry I was that each of them wasn't feeling better. As I logged on I began bracing myself for the number of times I would have to type condolence messages for their individual losses each day, each week, each month.
I ran out of condolences.
So many people existing with constant, chronic, never-ending, unceasing pain.
The problem isn't the people. The solution isn't a support group.
The problem is the omnipresent pain.
Comments
Post a Comment