Someone once asked me why I started blogging. At the time, I thought it was about helping myself cope. I’ve since realized that it’s much bigger – andfar more important – than just one person.
Why do we tell stories? Why share at all? Stories bond us together, enabling us to find common ground in the human experience. Finding the courage to speak our truth, share our chapter of this massive “book,” is crucial. It’s especially important for people who are living with chronic illnesses.
RSD has given me moments that run the gamut, from being told that “the pain cannot be as bad as (I) described it” to finding compassionate allies in support groups. RSD is isolating. It’s not recognized like other ailments. So we battle every day for awareness and acceptance. Though we’ve come a long way, there’s still a massive journey ahead.
So I share my story. It actually took me years to publicly admit that anything was even wrong. Parents, teachers, neighbors – no one knew. I kept it private because I saw how medical professionals treated me early on. I didn’t want to explain my weird health problems. It was awkward and disheartening. So I kept myself to myself. Only those closest to us understood the depth of what was happening.
I occasionally heard other patients talking about their RSD at the doctor’s office. It was terrifying because they were so debilitated, so sick. I never joined in. One man’s experience resonated the most. I was sitting in the waiting room when the door opened. In came a man in a wheelchair, slumped and moaning, an emesis basin balanced on his lap. When his companion let the receptionist know he’d arrived, he said, “Something’s wrong with the pump. He’s been throwing up all night.” I sat, immobilized. Was the pump that caused all of this man’s upset the same one they were encouraging ME to have implanted?!? Forget it, I thought. No way. And thus, the surgery was put off. But then, I saw the same man a few months later. He looked so different, I barely recognized him. Sitting upright, smiling. I got the courage to ask about his improvement. His answer was, “They adjusted my pump. I feel so much better!” But then we both got called in. I never got to hear the rest of his story. I wish that I had.
Years ago, I found a chronic pain support group. It felt weird to me, sitting in a circle, everyone talking about how bad they feel. This group was not helpful. I was the only one with RSD. Even my support group looked at me like a freak. Everyone else was dealing with things like arthritis and cancer pain. Once again, I was an outsider. My relationship with the group didn’t last very long. All anyone talked about was how bad things were, which is important obviously. But there was no encouragement or ways of coping, no “this helped me” type of stuff. And the group leaders seemed more judgmental than supportive. It was depressing. So I stopped attending the meetings.
That’s one of the best things about the online groups I belong to. Of course we vent, we get upset and need to talk about it. That’s imperative! The groups are places to speak your truth without judgement, among people who completely get it. Finding that safe space in a world where people don’t necessarily believe you or care enough to understand? Priceless. I pray that none of my non-RSD readers EVER has to find that out personally.
Telling your story, your truth, is crucial for everyone. We validate each other by caring enough to listen, to really hear what’s being said. When you’re made to feel like a freak for any reason, it’s a game changer to have others respect you. When people care about your journey – whether it’s medical, social, etc. – it’s as though you’re no longer a ghost. Does that sound odd? I think my fellow RSD warriors will understand.
RSD makes us outsiders. Our descriptions of the pain and symptoms make us anomalies. I’ve had residents sit across from me as recently as May, looking as though I was just pulling random adjectives from the air. They simply don’t get it.
So much of our condition forces us to avoid touch. Having someone innocently brush your arm can cause fiery flares that are agonizing. Getting bumped on a crowded bus or train is inevitable. Having it happen when you have RSD can be a disaster. A spontaneous hug, a friendly arm tap, the snuggles of our children – those human connections often get lost. So RSD-ers rely heavily on our words. We therefore also rely heavily on the words of others, on how people react to us. Positive feedback, encouragement, kindness. I think they help us focus on healing, on taking better care of ourselves, because we’re not battling constantly to be believed or accepted. I cannot stress this enough.
Listening, having empathy for another, makes us better people. For those among us being heard or finding that safe place for the first time? That is everything.
Tell your story. You never know who might need to hear it and realize they’re not alone.
I write not just for my own healing, but for every RSD warrior. Every chronic pain patient who’s labored to be understood, heard and accepted. It’s hard for people to put this pain into words. It’s hard for me! But I endeavor to try.
Be kind to one another.
Peace and painlessness,