4 Lessons My Rare Disorder Has Taught Me


Earlier today, I was on my own and went for a walk. I woke up in more pain than usual but decided that it wouldn’t stop me from getting outside. If I hadn’t, I’d have spent my time — like most Saturdays — in my pj’s, wishing I’d had more energy to do something. Not that there’s anything wrong with that. But the weather will keep on changing. Colder isn’t better for me.

Anyway, there I was, walking along the park and feeling pretty good. I started thinking about new blog ideas and articles that need finishing touches and my schedule for this week. As I reflected on the goings-on in my online group, I realized we often revisit core points that affect all reflex sympathetic dystrophy syndrome (RSD) warriors. 

Lesson #1: People need people.

After my diagnosis, not only had no one in my life heard of RSD, but I couldn’t even find a support community focused on it. The nearest thing to one was a chronic pain group. It was not supportive. Everyone was deeply depressed and showed no hope at all. That’s normal, of course, to some degree. But the leaders did nothing to encourage us and to show us ways to try to feel even a little bit better.

Of course, there’s no way to instantly feel better. I know that. But the folks that headed up the group made no effort to help us cope. I stopped after two sessions. It was a difficult trip out there anyway. At least that’s what I told myself as I slipped back into my isolation. The truth is you can sit in a room full of people and still feel alone.

I have a wonderful family, a lot of support and I am so grateful. But it was next to impossible to really describe what my body was going through. That’s why it’s so important to find a good support system within the community. A perfect example — especially for folks who are less mobile or geographically isolated — is an online support group. Ideally, the group will share their experiences, good and bad, but also offer hope.

As I’ve said it in other blog posts, I would have given anything to have found a dedicated RSD patient group when I was first diagnosed. I was working as a registered nurse at the time, and no one knew what I was talking about. I think that scared me more than hearing the doctor tell me exactly what was wrong. None of the doctors and nurses — all from different departments — knew what RSD was.

Then I started getting looks of pity: “She’s got some weird disease.” Oh, help! It was more than a decade before I really had the chance to interact with my fellow RSD warriors. The closest I came was seeing folks during the annual Achilles Walk for Hope & Possibility in New York each summer. Then my back and legs got worse, and I wasn’t able to attend. I believed I could walk without pain. Or if I did feel pain, then it would be worth it. My family finally convinced me that, with my pain levels out of control, the event would hurt more than help. So I stayed home. 

In terms of friendships we already have, just offering a kind word and normalcy is great. Don’t disappear on us, unless being friends with someone who’s in chronic pain, possibly disabled and trying to cope every day is too much for you. Then it’s absolutely OK to phase out. It’s better for everyone involved. Some might not agree, but I prefer honesty. It’s unhealthy to force a relationship that benefits no one. 

Lesson #2: Hope and joy help us cope.

There’s something to be said for believing that things will get better, even though we have no way of knowing if they will or won’t. Believe me, I don’t always walk around like “Polly Positive.” But I try to keep upbeat people around me. If you make me laugh, we will be friends. If you’re perpetually negative — a “Debbie Downer” — I’m sorry! I’ll chat for a moment, but we will not be getting coffee anytime soon. It’s not personal, it’s for my health and well-being — and yours.

None of us need constant reminding that our health is a problem. Believe me, we are well aware of that fact. Maintaining hope is crucial for me. Maybe it’s not even hope for a cure or major changes in my health. Maybe keeping hope for a good day, a funny Facebook post, for a night with more than an hour of sleep — maybe that’s enough. Hoping for the little things. Taking time to be silly and laugh. That’s enough. At least for me. I’m not an unrealistic person, but I need an incentive to move sometimes. Hoping helps me to do that. Allowing ourselves to have fun and sharing good experiences enables us to focus on something besides the topic that consumes us most: our health and well-being.

Lesson #3: Aggressive suggestions don’t always come across as helpful.

“Poor you. Have you tried (fill in suggestion here) because it really helped my best friend.” “I can’t believe that didn’t work for you! My sister said it always works.” Maybe folks who say things like that aren’t aware of how unhelpful those comments can be. They are, at times, toxic and unsupportive. And they make us feel worse. Comments like that — depending on how they’re made — don’t offer hope or help, they’re chock full of judgment. And that we don’t need.

I’ve had many interactions with people who, rather than making a general, well-meaning remark, make an accusation instead. It’s “Have you tried?” versus “Why haven’t you tried?” Maybe we have. Maybe we haven’t. Many of us have spent a long time finding combinations of treatments and meds that work as well as possible. It’s a lot of trial and error. I can’t even remember all of the meds I tried that didn’t help. Thankfully, after more than seven years of mixing and matching, my docs landed on a combination that really works — a plan I’ve followed for six years.

I’ve been lucky. I can say that now, but back then it wasn’t easy. And I’ve recently discovered that the lupus med I was able to take without problems 18 years ago doesn’t agree with all of the other meds I have to take every day. So when the lupus flares, as it has been for about a month, I’m in a watch and see situation. That’s an unexpected fail. But so far — knock on wood — I’ve been managing OK.

Most people are kind and genuinely mean well. And, honestly, many great ideas are passed along in our groups — things we haven’t known about that are amazing. It’s the people who believe they’ve hit the Holy Grail of 100 perfect perfect treatments — and somehow express that no other option is right — that concern me. 

Lesson #4: We’re still us.

Believe it or not, we’re still the same amazing people that existed before RSD. We’re just managing life differently. It’s far too easy to forget that. Even we forget it! 

I’ve sewn for most of my life, creating little crafts here and there. I loved making my daughter’s Halloween costumes. About six years ago, I began designing and styling costumes for a middle school dance program. It’s given me a creative outlet but, more importantly, a purpose outside of my home life. And I needed it. We all do! 

It becomes common to view ourselves in one light — as patients. But we’re complex individuals who love cooking, seeing movies, extreme sports and whatever else we enjoy. We’ve had varied careers, ambitions and plans. Although our abilities may have changed upon diagnosis, we haven’t! I started to look at myself as one massive medical problem, and one bad thing after another just compounded that feeling. Over 18 years, my self-esteem lowered substantially. Gradually, I lost myself in that negativity.

It’s taken a long time to shake that low sense of self. Yes, I have lupus, RSD and arthritis. Ok, so I have arachnoiditis and a hole in my heart. Yes, I take meds to function well. So what? I’m still a creative person. I’m a wife and mom, a daughter, sister and friend. I belong to a great online support community. I’m a blogger. I am more than my hospital chart describes. So are you.

Try to see past all of your medical issues and remember the true you. Even if it’s just a little peek, don’t forget to share yourself with the world. You’re worth it. There are other lessons. My eyes are open. I’m ready to seek out new adventures as my complete self.

And I look forward to learning about your journey, too. After all, we’re in this together. 

Follow this journey on painintheBECK.

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