Like the way that Complex Region Pain Syndrome, or CRPS, affects your whole body, and not just one part of it, so too is it’s effects on you and your family. Even if you’re the only one afflicted with the sickness, your whole family feels its consequences. Though, yes, you’re the only one who feels the physical pain, you are not alone when it comes to the mental anguish and the emotional torture. Your family does not want to see you suffer, and because you are suffering, they cannot help but feel for you. And sometimes, they can go the other way. They can become skeptic of your pain, tired of taking care of your needs or even downright hostile towards you and your condition. Talk about rubbing salt into the wounds.
However, your family can deal with CRPS effectively and still keep your bonds of love and trust together, as long as they want to. They should go the extra mile and let go off their intolerance and stubbornness. What you really need during these times is understanding and acceptance. True, you won’t dwell on your pain and you’ll try to keep up as normal a routine as possible, as long as they understand what your effort will entail. You can still spend time bonding with your family, even though you’re in a lot of physical discomfort.
One key thing that families affected with CRPS needs is trust and honesty in communication. It won’t hurt for you to open up to your family, especially since they’ll probably feel vulnerable and helpless as well. Remember that this is a disease that is hard to pinpoint, and harder to cure, so it shouldn’t be a surprise that your family feels like they can’t do anything. It’ll help both of you if you an open, honest heart-to-heart, as long as you don’t make the mistake of venting out your anger and frustrations on your family member.
Another thing you should always keep in mind is that money is power. The more you know about the subject, the more you can do about it. Take the time as a family to go online and look at the many sites dedicated to CRPS. You can even go together to support groups so that you’ll know how to act as a family in facing the disease.
Virtually, this disease is here to stay, and any amount of cajoling or threatening from your family members is not going to make it go away. This is the moment when you need your family the most, to guide, to support and to advocate. Family members should always keep in mind that this is not a joke, and you are not milking this. You are really in pain, and the constant medications and treatments are a burden on you, as well. In return, maybe you can help out as little as well. Put a little effort into being just a bit more affectionate towards them, do small chores around the house, basically just show them you’re grateful.
Don’t forget to also bring your children into the fold, as they are often overlooked in such matters. Once you find your balance, take the time to talk to your kids, and tell them as much as you think they can handle. Don’t underestimate them too much.
Older children can be even more of a blessing, as they can understand more about your condition and have all the willingness to help out, but without all the resentment and bitterness. Laying it out in a way that they can understand can help a lot. Younger children need to have it simpler. Tell them that even mommies and daddies can get sick, and that you need their help to get better. They’ll love doing whatever they can for you, no matter how big or small. It makes them feel good to know that they can take care of their parents too.
And for those family members that are just a big headache, just let them be and take them into stride. Find time to set them aside and talk to them sincerely. You can even ask if they can go with you to a doctor’s appointment so that they can learn more about the disease firsthand. Perhaps then, they will get what you’re trying to tell them.
CRPS is not something that you can take on your own. You’ll do a lot better knowing your family is there to support you as it helps you not only heal faster physically, it also eases the emotional wounds.