Hi Az-Di,

Sometimes dealing with hurt feelings due to lack of compassion or understanding of others is almost as painful as dealing with the disease itself. It sucks and I'm sorry that anyone dealing with long term illness has to go through that part of it.

One thing I have found helpful is giving small easy to understand descriptions of what it is like to live with CRPS. For instance one example that I recently gave to a friend who is a rock climber and has had many 'rock rashes' while enjoying that sport - I asked her to imagine the feeling after slamming up against a rock, where skin is exposed to air and then what it is like to clean and remove dirt from it with alcohol.. then I say imagine that pain never going away and it being on an entire limb or limbs for that matter. With my husband recently when he got cut.. I dared him to pack the wound with sea salt not telling him why. He did it and then even more than before he understood as best he could just one of the symptoms I have on a daily basis. Sometimes it is easier to help them understand a little bit at a time.. and at least for me it has always worked out better when out of the blue I just ask them if they have ever experienced something like x,y & z or say can you imagine what it would feel like if _____ and then gently express that this is how you feel every waking moment. People don't understand and can't process "pain" as most people have only felt acute pain that subsides over time. So trying to get someone to fathom chronic sever pain is pointless .. they are not wired to understand. In the movie The Bucket List there was a great example of one of the side effects of chemo (and having been through that myself I know that it is true) as being like napalm is coursing through your veins. That is a great example as well of the type of pain but.. unlike with chemo it never goes away. Sure sometimes it might be slightly better but, then there are times when it is absolutely unbearable which is what most people don't quite get.

However, we are not alone in how people treat us or have a hard time understanding. My dear friend passed away a few years ago from the affects of MS. She was stoic throughout her battle and even though the affects of MS were visible people still neglected to ask her how she was feeling or offer very often to help her with things that were difficult and then later impossible for her to do on her own. They judged her husband who was an amazing example of the kind of love and care you would give a loved one suffering from a chronic incurable illness because, looking from the outside in everyone had there own opinion of ways in which he could do it better. Even talking behind her back at how she should "try harder" or walk instead of using the wheelchair.. it was horrible then but, now looking back it makes me ill to think about how unsympathetic people were along the way. Even I now wish I had done more.. went to visit more often than I did and took the time to ask her how she felt instead of ignoring the obvious. I try to think of that now.. why didn't I ask often? Well the simple truth is that I thought it was pointless to keep asking knowing what the answer was.. she wasn't going to get better and I knew this. So I guess maybe I was trying not to bring it up so as not to cause her any further pain. Ignoring the 'elephant' seemed better at the time - now, I wish I hadn't. People do also get wrapped up in there own lives and though that is painful sometimes I would much rather them do that, than to be in the same kind of misery and pain I(we) endure each day... even though that causes me emotional pain at times. I try harder now to live vicariously through others.. that means I've had to learn to listen more intently to others, help them ramble on about there day (some people get uncomfortable sharing all the great things they are doing when they know we can't). I try to show my enthusiasm for other peoples accomplishments and life adventures as much as possible so that they get excited to tell me all about it.. and that helps me feel a part of life. It also keeps them connected to me for when they get to a place that they want to understand what I'm going through.. there is a time for that, not just any day will work. Keeping in mind that friends and family also go through the denial, mourning loss etc., after our disease of CRPS begins to affect them. We go through it also.. and this loss is just as profound as the loss of life. That is where the 'timing' comes in. If you notice in the beginning that people really don't understand or change almost instantly - take a step back and ask yourself if they might be going through the emotional stages of loss... this is hard on everyone it touches and like CRPS spreads through the body it will spread through family and friends just the same.

Rambled enough.. sorry.

Before we try to get people to understand CRPS.. ask yourself honestly how you handled the medical misfortune of someone you know. Did you do right by them? If you did, bravo.. you are one of a kind! If you didn't measure up after knowing what you know now.. what would you have done differently and how do you think others will find a way to do what you didn't? Is there someone you know right now suffering with MS, Lupus, Spinal injury or even cancer? Have you talked to them recently? Have you put your health issues aside and went to visit them? These are just thoughts that I have.. a way for me to keep things in perspective so please ignore them if it doesn't make a bit of sense to you. We are all walking a path in darkness.. but, we are not alone, we are strong and we will get through this!!