RSD and Family Issues

I've seen a few posts from other RSD'ers on family issues. It is definitely a real issue for us and also one of the more troubling aspects of having RSD. In families that have always been close, the family issues can send you spiraling into depression. No one likes to be abandoned. Even less, a person hates to be ridiculed by those they love and made to feel like a junkie and/or faking it. This can cause someone to begin doubting themselves. Doubting the diagnosis and even worse, doubting what they feel physically.

Living life with RSD is hard enough without adding family issues on top of it. At a critical point in our lives, when we need the support of those we love the most, we feel betrayed. We need them to care enough, to love us enough, to click a link or tap a few words into the nearest search engine and read up on RSD. What is it, how it affects us, the symptoms, heck go read the entries on the nearest RSD board or two. Plenty of posts in forums to give anyone who cares to look a glimpse into our lives.

I don't have any solid answers to give to people on what to do or how to handle talking about RSD with the family. I do have experience with the not caring, not understanding bit. I feel they judge me from afar. They've made no effort to ask me about RSD, ask me where would be the best sites for information. My dad has made a couple of comments that make me laugh and infuriate me at the same time. My favorite one is I will become addicted/am addicted to the pain med. Another is one I've heard from other RSD'ers, I need to get out of the house more. *snort* Sure, that'll solve my problems I'm sure.

Here are some suggestions I've offered others with RSD on various boards in talking to family.

1) Print out The Spoon Theory story for your family. It's the first link which opens in a PDF document. I have loved this story since I read it. In a simple, yet moving way, it accurately describes the way we approach our days.

2) The website RSD Hope has a vast library of articles to read. This has been my most favorite site.

3) Another great website is RSDSA. They have built up a good library of articles on the various areas dealing with RSD, such as Children, Surgery and Treatments to name a few.

4) If you have family that live close, invite them to dinner. I suggest only a couple of people at a time, like your parents or a sibling and spouse, and talk to them. I do not suggest having a big family reunion to explain things. *grin* If your spouse is one of the ones who you'd like to understand, do the above and also schedule a night alone together, or a time after the kids are in bed, to sit down, talk and be open and honest.

5) Write a good old-fashioned letter or an email. Explain RSD to them in simple terms. Stick to the point and put in sites to go check out. Explain to your family why you can't plan anything ahead of time, and most importantly be honest about how you feel.

6) Getting your spouse or family member to come to the doctor with you is also good. Sometimes hearing something from a doctor carries more weight. It will help them understand faster, hopefully. I know some have "bad" doctors. The doctors who know nothing or next to nothing about RSD to begin with and have no interest in learning. If you, like me, have a good doctor who is knowledgeable about RSD and treatments, then try to have them come to one appointment. You could also ask your doctor at one visit if during the next visit he/she would take a few moments to explain to the spouse or family member a little about RSD. Since medication issues are there maybe he/she could also explain why you take the medications you do and the difference between addiction, tolerance and dependence.

I won't tell you any of this will solve all your problems. They won't magically understand RSD at once, but it's a beginning. It is a small step to open up communication with the family. Family issues can be complicated, even without RSD. With it, they can become even more so. There will be some who just don't "get it" and probably never will. Though it's easier said than done, you should not waste your thoughts or energy on them. You have a write to be upset and angry with them, but do not let it eat you up. It will only cause you pain, both physically and mentally. Stress is bad for us, we all know that. It's not good for anyone! For us though, it causes more pain. That is one thing we don't need more of.

All you can do is try to educate them, but in the end, they have to be the ones who make a decision. They will "get it", as much as they can without having RSD themselves, or they won't. I always hope family issues have a happy ending but sometimes there isn't one. Take comfort in knowing you are not alone in dealing with family issues. *gentle hugs to all who need it*