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) describe 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.
Actually, I’m going to amend that, all chronic pain is isolating, regardless of the diagnosis. Pain keeps us home… keeps us from participating in events – big and small… keeps us from the important things, like interacting – face to face – with others.
It took years for me 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. One of my neighbors finally asked me, years into this odyssey. She said, “I keep seeing you and wondering if you’re ok. I just didn’t want to intrude.” I’d run into her, multiple times, on our way to and from the hospital. (Back and forth, pretty much every month or so, for procedures endeavoring to give me relief). Finally, I explained what was happening. That’s when she told me that she’d been diagnosed with breast cancer. It was staggering. The two of us, next door to each other, each keeping massive health secrets from the outside world. From that point on, we were able to talk about the pain, about the things average conversations don’t touch on.
I’d heard other patients talking about their pain 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 his 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 pushing 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 and 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. I was the only one with RSD. Even my support group looked at me like a freak. Other members were 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” or “you’re not alone” type of stuff. And the group leaders seemed more judgmental than supportive. It stressed even more that I was alone. It was depressing. So I stopped attending the meetings. The one good thing that came out of it was learning about the spoon theory. Each of us got a tiny spoon pin with our membership paperwork. I loved the idea of it and being able to explain it to others.
Some of the best things about the online groups out there, are consistent empathy and the emotional boosts. We’re not alone! 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 believe you and care enough to understand? Priceless.
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?
RSD makes us outsiders. Our descriptions of the pain and symptoms make us anomalies. I’ve had medical residents sit across from me as recently as March, looking as though I was just pulling random adjectives from the air. They simply don’t get it. It’s aggravating.
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.
RSD-ers rely heavily on our words. Often, what we’re dealing with isn’t visible. During the last couple of weeks, my right arm feels like I have an internal sunburn with piercing pain, under my skin. To the untrained eye, it looks perfectly normal. To me, it’s swollen and discolored. Leaning on an armrest, just sitting with my arms relaxed – it’s all been impossibly painful. Accidental touches are so difficult because, in my head, I’m screaming “THAT HURTS!” Outwardly, I have to calmly say, “my arm is really bad today, I can’t let anyone touch it.” Which, of course, sounds ridiculous. My family gets it though.
Since we have to rely heavily on words, describing the nearly indescribable, we also rely heavily on the words of others. 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. And not having to talk “medical” is amazing too. Having what some would consider a “normal” conversation, that means people aren’t just seeing us as sick.
Listening, having empathy for another, makes us better people. At least I think so. For those among us being heard or finding that safe place for the first time? That is everything. And you are most welcome here!
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 person living with RSD, with chronic pain and illness. Every 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.
Wishing you good conversations, pain relief and comfort in knowing that you’re not alone. ❤️
Peace and painlessness,