Today I was talking online with a friend I have made who is also Chronically Ill and going through her own difficulties with disease activity, life challenges, lack of support, judgmental people and medications not working to reduce her pain… A common story but nevertheless incredibly sad and difficult.

As she wrote, I watched, I read and I then silently I was crying. Thank goodness we cant be seen

Why was I crying? Because I empathize so deeply with what she is going through and have had my own first hand experiences of such situations countless number of times, so much so that it is almost like I am living it with her. Its a visceral reaction to what is taking place on the other end of the computer.

It almost seems to be a form of referred pain where I am feeling the pain of my friend and I dearly wish I could do something. Anything. Its desperately frustrating when we can’t do more to help.

Referred pain, by definition, is when pain is experienced when it is distant to its point of origin… I think in every sense of the word that is how chronic friendships feel towards each other and even though I am no longer ‘new’ to these diseases and experiences, to me the pain never lessens. I never get so used to all the pain and challenges that my fellow fighters go through that I become hardened and blaze´ to it, and that it no longer penetrates my feelings and emotions.

I know that there are common cases where some people experience carer burn out or fatigue, but it hasn’t happened to me yet and I am wondering if it ever will. I am told that carers, nurses, paramedics etc become so hardened to the suffering of others that very often they become ineffective in their roles and should leave those roles as they are supposed to be ‘caring roles’.

As anyone can tell you, quite often many people in these situations don’t leave their roles (for various reasons) but it is apparent to sufferers and patients alike that they clearly no longer empathize or feel for those who are suffering. I have encountered this so many times that it is becoming the norm; sadly. The term ‘caring profession’ is quickly becoming a oxymoron .

However, since devoting time and effort to becoming an advocate and helping fellow fighters, I encounter so many people with so many difficult circumstances that it can be truly heartbreaking. Some of these people I have forged close friendships with and many times I feel I can hurt for them. It is very hard for me to remain distant and detached, even with strangers. I am sure that there may be more than me that react the same way.

It hardly seems surprising that we feel this way because there are so many shared experiences and challenges that we can identify with. The pain. The loss. The hurt. The rejection. The frustration. The fear. The unknown. The helplessness. The loss of independence. Sometimes its only fellow sufferers that can truly appreciate some of the complexities and emotions involved. Sometimes it can make me feel so helpless when I feel I want to help but can’t. Sometimes I have to face the fact that all I can do is listen; so I do.

I came to blogging and advocacy out of a keen sense of caring. I came here to help people remember that no matter how alone we may feel, there are so many of us all over the world, and we have don’t have to feel isolated all the time. I came here to help remind people we are worthy, no matter how much the world tells us otherwise. I came her to help others help rebuild a sense of self respect and identity, no matter how much the rest of the world may try to look down on us or forget us. I came here because this is one of the ways I thought I could help, through my writing and listening; so I do.

Referred pain is still pain and no matter where the source is, I think there is always something we can all do to help those going through some of the pain and struggle in life. Sometimes it can even be as simple as saying “I care”; so I do.

Gentle hugs,

Trish