No matter how hard they may try, it is difficult for family to really understand what the RSDer is going through. I truly feel that unless you have chronic pain yourself, you can not totally understand what it is like no matter how much you want to. Many family members grow weary of dealing with it, just as we do; but we can't walk away from it.
An example is; We have so many losses. We may be watching a holiday ice skating show and say; "oh how I miss ice skating". You've probably said that a thousand times and your family is sick of hearing you say that, but not as much as you miss doing it. Someone who is a nurse is talking about a patient and you say; "oh how I miss nursing". Again, you are saying this for the thousandth time. Your spouse says, why do you dwell on these things because it only depresses you? You see around you mothers playing with their children; something you used to do before your accident. You see someone jogging; something you used to do before your accident. These things surround you; how can you not think about them? They surround you. Family members think that you can put your RSD out of your mind. How can you when the pain is always with you 24/7 as a reminder. How can you forget about what you have lost when those reminders are with you 24/7? Do they realize this?
We try to make the best of our new lives and make a new normal for ourselves. This means changes in our family relationships. Some family members can accept these changes in our relationships and others can not. Those of us who are able to cope with the changes accept that these changes are out of our hands and let go of the relationships that can not survive these changes and cling to those that do survive the changes. Marital relationships have to change. When touch is painful, the way a couple expresses their love for each other has to change. When a partner can no long pull his/her own weight around the house, earning wages, etc the partnership has to change. When a parent can no longer do the same things with their child, the parent/child relationship has to change. When a sibling can no longer have an equal relationship as far as entertaining during the holidays, providing care for an elderly parent, but loves their sibling just as much as they always have; change has to take place. The question is, can the other person accept the changes that have taken place in the RSDer, accept the RSDer for who they now are and support them emotionally.
In my life I have accepted that my husband has accepted certain aspects of my RSD; he has accepted my physical limitations, but doesn't do well with the emotional toll that it has taken on me. He leaves that to a therapist. He is more than willing to take over household chores that I can not do and in no way makes me feel badly that I can no longer work. He works his butt of to support me economically and emotionally to the best of his ability.
My mom for whatever reason can't accept completely this disease. Intellectually she understands that I am in pain, but she can't alter her life for mine. It is just the way that she is and I have accepted that. You love people you love them for them faults and attributes. I've had surgery and have had to have friends come to stay with me when my husband has had to travel for work because my mom was not the right person for the job. I rarely tell her when I am in pain. As a mom, I can understand that it is hard for her to think that her child is in pain; but we are completely different types of moms. My youngest daughter is blind. My daughter can tell me anything. I have never felt that I could tell my mom anything. I feel that if I talk to my mom about my pain, I have to then console her expending more energy. It is just easier to say that everything is ok. My mom calls me with her medical problems, because I am a nurse, so in many ways, the roles are reversed. I've accepted that.I love her for who she is and know that she is not one of the people that I go to when I need support!
My father died thinking that RSD was all in my head because a leading neurologist at University of Pennsylvania (who would be in his late 80's if he were alive) told him that it didn't exist and he believed him over me. They had been friends for years and went to church together for over 30 years. Even though I took him to a conference at Atlantic City where leading scientists talked about RSD (he only attended one talk and preferred to gamble the rest of the time) he didn't believe that it was true. He would rather believe that it was a mental illness than a physical illness. That never made any sense to me. Ironically he died of ALS (Lou Gerigh's Disease) which is also a neuro muscular disease.
I have two aunts who I am very close to. They have taken the time to research RSD and understand it. Being my mom's sisters, they also get very upset when they know that I am in pain. I tend to down play my pain to them because again, it is more difficult to deal with their reaction than to just say things like "I'm hanging in there".
I do have cousins (the kids of these same aunts) that I can be honest with. They are much younger than I am and have practically grown up with me having RSD. They are in their 30's and I've had RSD almost 16 years. They can tell by looking at me when I am in pain. I have some friends who can read me the same way. I don't have to say a word and they can tell how I feel. My husband can often tell the same thing by looking at me. My face is beet red, my body is swollen, etc. My one daughter can't see those cues but the other can.
I tend to protect my girls and not complain to them. That stems from the fact that they were in 6th and 8th grades when I had my accident and I wanted them to have as normal of a routine as possible. It wasn't always possible but I tried.
Although some family members truly do try to understand what we are going through, can they really know what it is like? Others don't even try. Do we accept them for who they are? Do we write them off and go on without the in our lives? That's a personal decision. Only you know how much stress it causes you to deal with the lack of understanding and how important these people are in your lives. Many of us have so few people in our lives. Friends disappear because we can't just spontaneously go out shopping or out to lunch. They drop us like a hot potato. I can count on one hand the friends that I still have pre-RSD. Most of them are childhood friends. Sometimes family is all we have. Sometimes even family bail on us. Some of us only have other RSDers to depend on for support. Whoever you have in your life, be thankful that they are here for you. This holiday season, let them know that you appreciate them. It doesn't need to be with a monetary gift (most of us struggle in that way). Just let them know that you appreciate what they do for you, that they TRY to understand what it is like to be you and that you love them.
To my RSD friends out there; I do appreciate all of the love and support that I get every day from all of you. I look forward to our interactions in 2012 and wish you a happy healty new year with low pain, the support of your family and friends.