I don't want sympathy.
I don't need my family and friends to feel sorry for me. In fact it is the opposite. I want them to still see me as the strong, both mentally and physically, person that I used to be.
Therefore when I don't feel strong, either mentally or physically, I have a tendency to hide. I isolate myself with my animals who love me no matter what I feel like or if I cry alot or sleep all day.
Sometimes I attempt to break out of this isolation and share with a family member of friend who doesn't have a chronic illness. Usually we both leave the conversation disatisfied with the outcome. Maybe they make comments about how their head or knee hurts, professing to understand how I feel. How can they? Their head or knee will feel better with a couple of Advil or rest. This isn't their fault and I love them for trying. They want to help and give me sympathy but it makes me feel bad that I have burdened them with my problems and they feel like I'm always complaining. Or perhaps they offer a solution that worked for them and can't understand how I can not immediately drop everything and rush out to buy the latest and greatest cure.
What I need is empathy. This is somethig that only another person dealing with the same type of problem can relate to. I can turn to a few trusted friends or groups where I can unburden my feelings and get both practical advise and understanding. Sometimes I forget the value of this empathy and stay hidden longer than I should. The past few days are a good example of this.
Last weekend I took part in a horse show, something that I love with all my heart. For the first time it was almost physically impossible to keep going. Every stride was absolute agony and brought tears to my eyes. Up until now I have been able to put the pain aside, both with adequate pain control and shear stubborness of will. This weekend I was unable to do that and it scared the hell out of me. The future loomed dark and terrible. What if someday I couldn't do this anymore? What if three days of labour and effort become impossible? What if beyond that even an hour in the saddle became impossible?
I tried to express my fears to a few people close to me who either tried to show sympathy or worse gave flippant, 'of course you can' speeches. One asked why I did it if it hurt so much. One simple answer...I love it. I realised that in my efforts to appear strong and able bodied I had hidden just how hard it was.
Maybe I need to explain that the medicine I'm on IS IT. Maybe types or dosages can be adjusted, but if 3 opiate pain killers didn't make it tolerable on Saturday morning, what the hell would? I see one of the best rheumatologist in the country, a Fellow of the Arthritis Foundation, who does research and teaches around the country. I am on the latest and greatest Biologic and a well proven DMARD. I have a medical team who controls literally every step and breath I take, yet I'm still getting worse. Unless someone discovers a cure, this is IT, at best.
This morning I was finally able to put this into words to a dear friend who also suffers from chronic pain. She didn't whine and wail for me. She listened and didn't interupt even when I choked up. She didn't try to compete with her symptoms. She made a few suggestions that made sense, but mostly she was just there. Non Judgemental, not critical, not frustrated at me....JUST THERE.
I can't expalin how this helped. It didn't cure me, or get rid of the pain, or even offer any hope that all the worst wouldn't come to pass. But it did. The sun came out and I have spent the day looking forward, not too far, but just as far as the next show.