I have had a chronic illness (CRPS – Complex Regional Pain Syndrome) for over 32 years now. Before CRPS, we were always out being social with friends and family sharing every moment we could together making memories.

But it seemed since my diagnoses things slowly changed. Not because of my disability, but because of the way others viewed it. I remained isolated for a good part of all those years, keeping to myself, and just trying not to be a bother to others around me. I knew what was causing the isolation and loneliness, but for the most part I just resolved to the fact that my life was just going to remain lonely forever due to my illness. I mean, there was no cure for my illness, so there must be no cure for my loneliness, right?

The past three or four years I started trying to take a more positive, proactive approach to it all instead of just sitting back and hoping things would change on their own. I am a very sociable person by nature, so staying to myself was not good for my mental health to say the least.

I finally discovered that communication was the key! In the past, if an issue happened to do with friends and/or family misunderstanding my condition, I would just accept it, take a step back, and never really even try to explain anything.

But I soon realized something major! Complex Regional Pain Syndrome (along with many other chronic conditions) is hard enough to understand for someone Who Actually Has It!!! Imagine trying to get someone to understand who has never even heard of CRPS. That is nearly an impossible feat. Especially if you don’t communicate your feelings or reasoning behind things to them.

So communicate! If friends or family keep inviting you to go out (you truly want to go), but something always seems to happen right before the event (because of your illness) and you have to cancel, most likely after a few times of you cancelling with no real explanation….judgement will set in (unfortunately). They will either start thinking things like “you’re a flake”, “you just don’t want to go out with them”, or “why invite them, they’re just gonna say no anyway… why bother?”

Don’t just sit back and say nothing or go without explanation. Don’t let them just “imagine” why you’re cancelling. (You know the phrase, “when you don’t know you tend to imagine the worst?”) Tell them exactly what is going on. Tell them usually if you are going to have an outing (because of your condition), you must rest up a couple days beforehand to be able to withstand the activity. And that is still no guarantee that you will be able to attend.

Sometimes you can rest up and still have a flare right before the event that puts you back in bed. Let them know that your condition is VERY unpredictable and a lot of times it is the pain that keeps you from doing things, it is not you. But let them know you do have the best intentions in mind and you DO actually want to go every single time they invite you, so Don’t Stop Asking! I guarantee after communicating an explanation, they will have a better understanding and will continue to include you in their invites.

There are so many circumstances that warrant communicating an explanation. I’m sure you’ve all heard, “Well, she looked fine yesterday, how could she be that bad today?” Explain how that happens or why it appears that way. First of all you weren’t fine yesterday….you have to basically fake being fine…but then usually the next day you pay greatly for all you did the day before. Sometimes one productive day leads to many, many days in extreme pain in bed afterwards. Explain this, educate them, don’t just let them interpret the way they think best. Then the next time instead of them thinking “you’re faking”, they just might take care to not let you overdo again so you won’t pay so dearly for it the next day – because they might just understand.

I can’t tell you the amount of years I had the mentality… “Why bother? They aren’t going to understand anyway!” But it seemed that kind of thinking got me nowhere, but alone.

Yes, there are some people that have been around me the entire 32 years with this monster and I am still explaining the same things over and over again. And there are those that think…if they can’t see it, it doesn’t exist or it can’t be that bad. Don’t let those comments discourage you. Keep speaking your truth. Keep trying to help them understand. I can tell you that some of my best friends are the ones I explain everything to about my condition and they truly know and understand that I AM MORE THAN JUST MY CONDITION.

Even with that being said….my outlook now is… do nothing / say nothing….accomplish nothing.

So good communication, an explanation, and speaking up for yourself is the key to your social contentment (in my opinion anyway) when having to deal with any type of chronic pain condition.

In closing: Advocate for yourself, explain, educate, and talk about your condition. Go out and do those things you want to do with those people you like doing them with… just be sure to let them know you’ll probably be resting for a few days afterward.