The Ties That Bind Us: Lessons That My Rare Illness 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, 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 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, 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. Truth is, you can be sitting in a room full of people and still be 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 that 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. I’ve said it in other blogs, but 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. Doctors, nurses – all from different departments – none of them 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 in NYC each summer. Then my back and legs got worse and I wasn’t able to attend. I believed I could walk and not suffer for it. Or if I did suffer, then it would be worth it. My family finally convinced me that, with 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 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, sharing good experiences, enables us to focus on sometime besides the topic that consumes us most: our health & wellbeing. 

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

“Poor you. Have you tried —- because it really helped my best friend.” “I can’t believe that didn’t work for you! My sister said it always works.” Maybe certain folks who say things like that aren’t aware of how unhelpful those comments can be. They are, at times, toxically 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 judgement. And that we don’t need. I’ve had many interactions with people who, rather than making a general, well-meaning, “Have you tried —–?” remark, it becomes an accusation. Something akin to “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 7 years of mixing and matching, my docs landed on a combination that really works, a plan I’ve followed for 6 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, (on its own), 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 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 treatments – and somehow express that no other option is right – that concern me. 

Lesson #4 We’re still us.

Believe it or not, we are still the same amazing people that existed before RSD, just managing life differently. It is 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. And, about 6 years ago, I began designing/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. We are complex individuals who love cooking, seeing movies, extreme sports, 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, one bad thing after another just compounded that feeling. Over 18 years, my self-esteem lowered substantially. I thought about who I was when I met my husband, who I was when I started my career as a nurse.  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, 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 the medical and remember the true you. Even if it’s just a little peek, don’t forget to share yourself with the world. You are 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. 
Happy Holidays, 




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