Complex Regional Pain Syndrome does not affect the person diagnosed with it alone, it touches the whole family. CRPS impacts every aspect of our lives, emotionally, physically, and financially. We need the support of our family as we try to navigate our way through the CRPS maze. We battle disbelief, skepticism and even hostility from family. This adds to the pain we deal with everyday.
There are ways for family to cope with all the changes CRPS brings. It requires family members to set aside prejudices and attitudes. All we ask of family is to take a step toward understanding with an open mind. We do not want to always talk about our pain. We try to live our lives as normally as possible. We can still laugh, focus on hobbies and if our pain lets us, do things with our family. This does not mean we are not in pain. It means we refuse to let pain rule our lives.
The most important way to approach CRPS is through communication. Spouses feel helpless when CRPS invades their lives. There is no way to fix what is wrong. Make time at least once a week to sit down and talk. Be open and honest with one another. Do not make the mistake of venting anger and frustration at your loved one. Rather, make it clear your feelings are aimed at CRPS.
We have to research and learn what CRPS is. No one has ever heard of it until they are diagnosed. Knowledge is not just for the patient, it’s for the whole family. If you are not sure where to start, there are support groups online. They have resource sections of websites with correct, up to date information for family to read.
Patience and understanding from family are important. CRPS is not going to go away. We need our families to stand beside us, to speak up and advocate for us. Family members should remember we are not being lazy, we are not faking it, and we do not enjoy taking all those medications. Take the initiative to do chores around the house. We will be thankful for your thoughtfulness to help make our lives less stressful.
Children are the family members, who initially, are overlooked. There are so many uncertainties and changes with CRPS, it is hard to look beyond our own bodies for awhile. Once you are able to catch your breath, sit down to have a talk with them. Children are resilient and given a chance they are more than willing to help.
With older children tell them a little bit about CRPS and some of the outcomes. Tell them exactly how they can help. If the children are very young, keep it simple. Explain mommy or daddy has a boo-boo and sometimes you will hurt a lot. Make them a part of the solution by giving them small chores to do. They can also get items for you, like a can of soda or something easily reachable and light. I know from experience that small children love doing things for their parents. It makes them feel like big kids.
There will be some family members who do not “get it.” They may say and do things that are hurtful. Make the effort to educate them by sending them websites. Ask them if they will go to a doctor’s appointment with you. Hearing about CRPS from a medical professional can make an impact on family members that you cannot achieve explaining on your own.
Anyone dealing with a chronic condition needs the support of family. CRPS can and often does become a progressive, debilitating condition. Knowing our family is making the effort to educate themselves allows us to focus on our health.