How to help a love one who is struggling with CRPS/RSD. The best way to help them is to follow The “LESLIE” Method.
LOVE: An RSD/CRPS patient needs to know that regardless of what they are going through, how much they are able to do, or the pain they are feeling they are still loved. They need to hear this from you, don’t just assume they know. Someone with a chronic illness like RSD/CRPS will feel as if they are not adequate due to their inability to do things like they use to, so it is very important they they feel loved.
ENCOURAGEMENT: An RSD/CRPS patient needs a lot of encouragement. It takes everything they have just to get out of bed in the morning. They are in pain, they probably are not getting much sleep, and they feel just awful over-all. Encourage them to go places, encourage them to talk to others, and most importantly, to express their feelings. You can help with this by asking them if they want to go somewhere with you. Out for lunch, to a movie, shopping, etc.. Remember, it is not good for them to sit at home and think about their pain, so help them out. Keep in mind, it probably takes a lot of energy for them to go out, so be patient with them.
SUPPORT: Support is a very important part of their treatment. By support, I do not mean that you should do everything for them, but mearly, talk to them about their diagnosis. Ask them if there is anything you can do to help them. Offer suggestions on making it easier for them. DO NOT be judgemental of them. ALWAYS keeping in mind that these patients tend to feel depressed, overwelmed, and sometimes even worthless. You may not understand what they are going through, which it would be impossible to understand if you have never been diagnosed with something as serious as RSD/CRPS, but if you want them to get better, and remain an important part of your life, you MUST offer support, without being judgement.
LISTEN: It is also very important that you take the time to listen to them. It may seem like “They are always complaining” or “They never feel good”, but this is not unusual for someone with RSD/CRPS. They need to know that they have people to talk to. They need to know that someone cares and will take the time out to be there for them. Please, please keep in mind that if they lose track of their family and friends, and feel that they have noone to turn to, this will raise their anxiety and stress, therefor, rasing their pain level, and higher their chances of depression. After you have listened to them, you might want to follow the support or encouragemnt models, and ask them if there is something you can do to help, or ask them if they would like to get together to do something. This will allow them to feel like they can talk to you, and therefor, let them feel like they have someone to “Lean on”.
INCLUDE: Incuding them in gatherings, such as: Family Functions, Parties, and Get Togethers, is imperative. As stated before, if they feel “Left out”, we are back to square one. RSD/CRPS patient’s are more sensitive then others, as RSD/CRPS greatly affects the nerves. Think of the most sensitive person you know, and then consider an RSD/CRPS patient to be 100% more sensitive than that. Be patient with them, but try to include them in as much as you can!
ENABLE: Allow them to have the “Power”. Allow them to express themselves. The truth is, the patient is the only one that can truly make the difference, however, they need the support to do that. If you allow them to feel, to acknowledge, to express what they are going through, it makes it possible for them to deal with the pain and frustration they are experiencing. Enable them- give them the power!
THERE IS NO CURE FOR CRPS/RSD!!! but it can be managed. It is not going to go away, but it can be controlled. You can help them to accomplish these goals, if you choose too!
My Journey With CRPS/RSD 