To the Friends Who Keep Scrolling Past My Posts About My RSD

Hi there. It’s me, your friend. I know you come to social media for a break from real life – I know I enjoy doing the same thing. I know you’ve got your share of stress, heartache or medical issues yourself. I may have even sent you messages to check in to see how you’re doing, or let you know that while you might not feel comfortable talking about your physical and mental load, I’m here if that changes.

I know seeing me post about my reflex sympathetic dystrophy (RSD) may not be what you want to see or hear when jumping on to Facebook, Instagram or Twitter. I know I’d much rather see cute babies, videos of chameleons popping bubbles or funny memes myself. But I want you to understand why I post them.

Living with a chronic medical condition is hard. Really hard. You probably remember me as the bubbly young lady. The dancer. The active friend who walked all over town with you, or climbed the seemingly endless stairs with no effort when the elevator in our dorms would break regularly. Sometimes I remember those times too, but it’s hard. It’s hard because I can’t do those things anymore.

I didn’t know anything about RSD when I was diagnosed on Christmas Eve in 2007. I remember sitting in my car as the snow fell outside and just crying. It was the first time that I heard that this horrendous, burning pain wasn’t going to go away. It started in my left leg, then jumped to my right leg. The cold winter weather would render me virtually immobile. I saw your photos of the ski trips, the tropical vacations, the performances and wished so badly that I could do those things too. Not because I was sad to be missing out – but because I knew the chances of safely being on skis or walking the beach in the Bahamas were probably pretty much nil at this point.

As my disease progresses, I lose more. The medications, doctor visits, painful procedures – they keep coming. They’re my new normal. But I’ve also gained things. I’ve gained perspective that helps keep me grounded. I’ve been blessed with a family and close friends who not only understand what I’m going through, but actively reach out to continue to learn about this disease. I’ve got a medical team who I trust and who listen to me. I’m lucky.

I’m still me. I’m a little different I suppose, but I’m still me. When I post RSD awareness information, it’s because I want you to have a glimpse into my life. I don’t want your pity or your sympathy. I want your understanding and your friendship. I want you to know it’s OK (and encouraged) to ask me questions. I want you to ask my husband how he’s doing since he’s become a caregiver. I want you to see the humor and positivity I can still find when it feels like I’m constantly on fire. Because I would do the same for you.

I understand why you keep scrolling. I get that the texts and phone calls may stop. It’s not pretty, and you may think you’re helping me by not “bothering me.” But I miss you. I miss having friends who can see me, all of me – including my diagnosis. I want you to see that I’m still standing in spite of all of the medical issues that have presented themselves throughout the years. And I’m smiling.

It’s OK if you’re not ready to see this. I’ll keep sharing little pieces of what my family experiences, so that you know that someone who loves you has this disease. I’m here when you’re ready to talk about it, or really, anything else.

And I’ll still post videos of chameleons popping bubbles. Because who doesn’t want to see that?

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Thinkstock Image By: Milkos