Wednesday, 29 June 2011

Who are you...a person or an illness?

Tomorrow I am going to a 10th birthday luncheon. It for the National Rheumatoid Arthritis Society. The Chief Executive and founder is Ailsa Bosworth.

I was at school with Ailsa in London, until she left at 16. We didn't really have that much in common and led very different post school lives. There was no particular reason for our paths to cross again.  Life can be quirky though and twenty three years later, we were surprised to find ourselves as neighbours, in a small Buckinghamshire village.

By this time, Ailsa had a partner, Brian, a lovely young daughter, Anna, and was holding down a demanding job. She also had something else. Rheumatoid Arthritis. A disease probably inherited from her father, which started to show itself in her mid 20s.

Over the last twenty five years, I have watched in admiration, as Ailsa has experienced life to the full, including family tragedy and economic challenges. Always in pain. Always waiting for another operation. Very rarely complaining.

One of the aspects of RA which annoyed Ailsa, was that there was only one large charity for people with RA. But it was an organisation that included all types of arthritis, so tended to focus on the more elderly members of the population. "I don't want to look at a magazine full of stair lifts and commodes," I remember her saying. "Where's something for people like me? People who are younger, work, run a home and socialise?"

Ailsa was also experiencing the postcode lottery with her medication. Fortunately, she had supportive doctors and together over the years, they fought to get her the best medication they could. But what a fight it was. Ailsa is rarely thwarted. Due to the prescribing injustices she experienced, she began to lobby and fight the system. Not only for herself, but for all the others with RA, across the social and age spectrum.

Eventually, ten years ago, the National Rheumatoid Arthritis Society charity was created. It is a growing and successful charity, helping thousands of people with RA and their families, all over the world.

As Chief Executive of NRAS, Ailsa travels, speaks and lobbies. She runs a home, socialises, enjoys holidays abroad and also works for Brian's video conferencing company. Ailsa is someone in whose company you can have a good time. She also has Rheumatoid Arthritis and there's always another operation just around the corner.

Another neighbour, who moved away, before Ailsa moved into the road, also sadly developed RA in her mid 20s.  Physically similar to Ailsa in many ways. But very different emotionally and how she has dealt with it.  Her attitude was the opposite to Ailsa's. She became RA. RA controlled her life, she did not control RA. Despite no financial problems, a beautiful home and a supportive family, she has not had a happy life. She blames RA.

My hairdresser has had Crohn's disease for decades.  She works full-time, rides a motorbike, has a great family and lively social life, in between visiting hospital for various procedures. A relative also has had Crohn's disease for decades. A talented and creative relative. She became Crohns disease. Crohns controls her life. She does not control Crohns. Her life has not been a happy one. She blames Crohns.

I am sure that we all know people who are their illness and perhaps have a struggle with life. We also know people who have a similar problem, but get on with their life. Which people enjoy a more fulfilling life? Given a choice, which people are we more drawn to spend time with?

Sometimes I inwardly wince, when I'm introduced to people who define themselves by their problem. I am...depressive/perfectionist/obsessive/victim/born worrier/sufferer/ pensioner/alcoholic/disabled...

I have been in a fortunate position to be able to help some people to see how they are so much more than their problem. It was a crucial part of our psychotherapy training - to separate the person from the problem. To help someone observe themselves as the individual they are, made up of many parts. Plus having a problem...or two...

This approach can also help people who have defined themselves by a label they were once given and still hangs like a yoke around their neck. "I am...a failure/no good/hopeless/useless/unlovable..." This can negatively include their star sign or the day of the week they were born.  A friend in her fifties once told me that she was anxious, because her sisters had told her that she was born full of woe on a Wednesday. Oh dear.

The person defining themselves by their problem or label, can be helped to remember who they really are: their name, a family member, a friend, a colleague, a member, a skill, a hobby and so on. They also have a problem or several problems.  Seeing the problem as part and not the whole, can make all the difference in the world. The problem can be managed in some way by the person. The problem stops controlling them. It gives them back control. We have a need to feel in control. (Control freaks are another matter.)

I am not denying that, at times, that a problem can seem overwhelming and totally intrusive. I, too, have spent hours curled up in a ball under the duvet, crying my eyes out. But, as one of my clients once said, " I realised I wasn't going to solve anything under the duvet." 

It is important that we don't see ourselves defined by the problem. It helps if we make the choice not to be treated as if we are our problem or encourage the problem to define all our activities. eg: some types of support groups* can be life saving short-term, but perhaps not for longer term. They may help prolong the agony.

*1. Where the reason for joining, is on a past event, which can keep it in the present. "If you pick it, it won't get better." 2. A person's recovery may lead to a feeling of alienation in the group.  

Ailsa talks to people about RA. It helps her in publicising NRAS to have RA. But she is so much more than RA. 

Happy Birthday NRAS. Keep on rockin' Ailsa.


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