By Samantha Anderson
Sometimes, we get so wrapped up in our pain and our diagnosis that we do not realize that CRPS goes beyond us. Our families can be changed because of a CRPS diagnosis. While we have to focus on working on our own pain, it can be important to recognize some of the impacts of CRPS being a family illness.
Last night, I was watching a television show with my mom. In it, the son was struggling with an illness. The therapist speaking to the parents explained that it is a chronic illness, which makes it a family illness. This does not mean that it is genetic, but it means that the family is affected by it. That’s why the mother could not stop crying and the father kept feeling so guilty. They would stay up all night trying to figure out ways to help the son, but in the end, it was out of their control. It wore them down.
I looked at my mom and something clicked in my head. While I have always known that CRPS affects more lives than mine, it was that example and seeing it on TV that truly made me realize what my family and close friends (or the family I have selected) endure day in and day out. While I didn’t have the specific ailment that the child on TV was dealing with, I’ve been ill since I was born. Some days, I still get really mad and frustrated with it all. I absolutely take it out on the people around me without meaning to. On my worst days, when depression is taking over and anger is consuming the other parts of me, I think that people have forgotten that I live with chronic pain syndromes and other chronic illnesses. I feel forgotten and like they are not considering how hard things can sometimes be. On my better days, I can see that it is nearly impossible for them to forget. It occurred to me how CRPS really is a family disease. I sat back, in awe of this realization.
How is my CRPS a family disease?
CRPS is what makes my little cousins nervous that they will be in a wheelchair because they get hurt and people say that they are just like me.
CRPS is the sleepless nights that my mother has had while I’ve screamed and cried myself to sleep with the pain while she tried to do everything she could to help me.
CRPS makes my husband take days off from work, which he gets paid hourly for, so he can help me get around the house when I cannot physically move myself.
CRPS are all of the times that my family hides their pains from me, because mine must be so much worse, so why should they complain?
CRPS is why my nephew must be careful around “Titi” because she hurts and hitting her leg would be bad.
CRPS is the copious amounts of money my mom spent on medications and alternative remedies to try to help minimize my pain.
CRPS is why my husband gets lockjaw while walking through a mall or in public with me, as he watches people get too close to stepping on my foot or hitting my arm, gritting his teeth.
CRPS is the straw that broke the camel’s back for my parent’s marriage, as I became too sick and my mom’s attention was always on me.
CRPS is why my family continues to discuss putting ramps on their houses, even though it was initially thought of for my grandmother.
CRPS is why my husband and I live with my mother instead of a tiny, third floor apartment somewhere.
CRPS is why my best friend carried an emergency bag with pain medication and a variety of other things during my wedding.
CRPS is why everyone holds their breath if I stub my toe or twist my wrist.
Does that all seem minor? Maybe. Do they all necessarily feel the pain associated with CRPS? No. However, they feel every emotion that I do, even if it is for a different reason. When one person receives a diagnosis of CRPS, the entire family becomes effected. Just like any other chronic illness, it changes our lives as individuals and within our families. I am lucky to have the family that I have, as they are in on this journey with me. It has been one of the most intense roller coasters, but they do not back down. I am not blind to the different things that they have all experienced or have sacrificed to help me. I am forever grateful for them. While I’ll never be able to make up for some of the things, I am lucky enough to fill space with amazing memories and positives. Luckily, I’ve come to the point in my life where I realize these instances are not “my fault,” as some would say. It is simply a side effect of loving me.
For example, CRPS has made my mom and outspoken fighter. She will not back down when she believes something needs to happen. She knew how to handle all of the doctors and medical professionals through my nana’s cancer battle.
CRPS has made my husband more compassionate towards those that live with chronic pain. He fights for the rights of people living in pain and will educate anyone that believes we are all “faking it.”
CRPS has taught my cousins that a wheelchair and cane do not define a person. They know that I am still me when I use these things.
CRPS has taught my family about handicap accessibility and how some places do the bare minimum for ADA purposes, but it can be unrealistic.
CRPS has taught my entire family to embrace the good days and to work with what we can on the better days.
To all of the CRPS warriors out there, do not feel bad or guilty that others feel certain ways. Do not get mad at them for getting emotional or frustrated that you are in pain. Generally, they are frustrated for you, not with you. They feel all of these different ways because they care about you. If anyone treats you as though you are inferior or not worthy of their love, you do not need them. You are strong and you are a fighter. You can do this.
To the families and love ones out there, you can do this. We need you to support us. Talk to us about the ways that you feel. Explain why you are crying or why you are mad. Realize we see this. Sometimes, we cannot help but feel it is our fault and it brings us down. We just need a reminder that you love us and support us. We have to work together to fight back against CRPS.