On the support group I participate in a parent recently posed the question about how to best support their child with RSD. Her plea came from a place of love because she has seen on the boards many people complaining about their friends/families ditching them not long after the RSD diagnosis. As a caregiver she is also affected by the RSD and has felt the loneliness of friends who just don't know how to support her through this trying time. Knowing how it feels she doesn't want to make those same mistakes. She asked us, what is one positive thing we as caregivers can do to make your life better and one thing we shouldn't do?
I have always said that it is important to find a support system. In our support group we often hear of bitter experiences where friends have stopped calling or coming around after the RSD diagnosis. Battling RSD means we have had to change, our new normal barely reflects the person we used to be. It is in the midst of this change that many friends back away. Maybe you liked us because we would go out with you on a Friday night dancing and drinking. Now, that lifestyle is just not possible but it doesn't mean we wanted to give it up. We would still love to hang out with you on a Friday night but we can't drink anymore because of our medications and we can't dance because we care barely walk. We can't even go out to listen to the music because the vibrations from the loud music travel up our bodies and cause even more pain. We don't want to ask you to do something different, we want you to be a good friend to choose an activity that doesn't cause pain! It is the fact that you are incapable of thinking like this that makes us wake up to the type of friend you are. A fair weather friend. That is why it is appalling to us when the "fair weather friend" accuses us of not being a friend to them, of not calling because friendship is a two way street. We don't have time or energy in our day to day battle to suffer such fools.
What ever strain RSD might cause on friendships it does help shine a light on those gems that might have been overlooked slightly. The friend who drives an hour out of their way to help you clean and organize your house. Walking slow next to you while you fight the pain just so you can go shopping. Hunting down the handicap elevator at a stadium so you don't have to walk the stairs and then leaving 10 minutes early so you don't have to walk through the crowd. A friend who helps drive you around when there is a family emergency. The friend who gingerly paints your toe nails knowing that you wish you could get a pedicure. The two hour phone calls that keep you distracted. The lack of phone calls for weeks at a time, because you really are not in the mood to talk. The funny pictures sent to make you laugh, knowing you are having a bad day. The understanding that comes from those friends when you miss the important events in their lives because you couldn't leave the house. Knowing when you are in pain but don't want it to beat you. It sounds amazingly simple these small things that make friendships shine. Yet only a few people in your life can live up to these abilities.
Losing friendships is unfortunately a side effect of life with RSD. It is a heartbreaking condition of life. I am encouraged though by the friendships I have held on to. I am encouraged by listening to others tell stories about their caregivers giving them awesome support. I am encouraged by the Mother who wants to learn what she can do and not do so she doesn't fall into that category! RSD cannot be fought against while we are alone and lonely. We need a support system! Even if you find yourself in a situation where you once had 10 friends and now only have 2 that you can call true. Focus on those 2 and say goodbye to the 8 who could not stand up to RSD for you. RSD is hard enough to fight, don't waste your energy on those who are not willing to be a real friend. Take some time to be thankful for those friends who continue to stand by your side and help you fight.
No comments:
Post a Comment