Personal View: Adapt and survive - don't give up

Having just had my left index finger amputated and been appointed editorial registrar at the BMJ, I can say with confidence that life does not always work out the way you plan!

When I graduated in 1992 from Aberdeen, I had a vague idea of what I wanted to do. Paediatrics in a developing country was looking likely-I had worked in a nutrition centre in Bangladesh for my elective, and in an orphanage in Romania for consecutive summer holidays. Having survived my house jobs, I opted for a general practice vocational training scheme as I thought this would be a useful addition to paediatrics for working abroad. While I was doing my medical rotation, I became increasingly alarmed at the colour of my hands, which at times would be almost black. Not wanting to be a paranoid health worker (every sore head is a potential brain tumour), I waited for months before seeing a rheumatologist, who soon diagnosed me as having CREST syndrome, a rare connective tissue disease. Just to confuse matters this is now called scleroderma, and to confuse matters even more, scleroderma also used to be called systemic sclerosis. Trust me to get something as complicated as this. From that point on, life has had to change, not because I now have a label attached to me, but because my body can't keep up with what I want to do. As this is a multisystem illness, everything can be affected, from the musculoskeletal system to the major organs.

I was an obsessive runner; a big blow was that the arthritis meant I couldn't run anymore, so I took up cycling. Even after recovery from a fractured coccyx after a disagreement with a car, chronically fibrosed tendons eventually made cycling an impractical option. So, now I walk everywhere instead. From a career point of view, decreased dexterity-a result of the associated Raynaud's-made paediatrics impractical, for example, when putting lines in neonates. I finished my general practice vocational training scheme but was finding clinical practice more difficult, and driving was a problem, too. Fortunately I have the marathon runner's mentality of "What's this? Pain. Carry on!" so I was not about to give up. I tried psychiatry but it was not for me. Still anxious to work in a developing country, I opted for public health and managed to get on a specialist registrar scheme. However, I felt that two years was enough to teach me the basics, and since my working life was probably limited, the time to go to a developing country was now. I was in the middle of studying the diploma in tropical medicine at Liverpool when I was rushed into hospital with a gangrenous hand. Luckily the care I received was able to save my hand at the time. Three months later, however, my index finger was amputated due to complications. This development meant that the charity with which I was going abroad would no longer take me; my prognosis was reviewed, and I was given a life sentence of being a "patient" yet again. It was at this time I saw the position of editorial registrar in the BMJ and just knew this job was for me. Fortunately, the team here seemed to agree.

My point is that no matter how bad the external circumstances may be, there is always something you can do. Never give up. The first step is to accept your predicament. By this I don't mean being negative and self pitying but realistic and pragmatic. It is always best to know your enemy so you're better equipped to fight-and, dare I say it, don't always believe everything the doctors tell you. Check out the alternatives and never be forced into doing something you don't feel comfortable with. Doctors can be quick to suggest treatments without realising that sometimes the side effects can be worse than the illness itself. I'm a terrible patient I know, but I feel I am entitled to a say in what happens in my own life. It is pretty important to me after all.

The next step is to adapt your life accordingly. I no longer think of what I used to be able to do. I can torture myself like that. Rather, I focus on what I can do now.

The third step is to believe in yourself and your abilities, no matter how much you are discriminated against. If I were disabled it would be unlawful to discriminate against me, but because I have a chronic illness I am discriminated against all the time. I can't have a mortgage, can't adopt children, and job offers are "pending occupational health clearance." I do tend to get on my soapbox about this issue, but I'm sure there are many people with diabetes or asthma and others of every age who feel the same as I do.

Please don't think I always get it right. I do get down at times, and there is a fine balance between pushing myself too hard and listening to what my body is trying to tell me, and as I'm sure my family will tell you, I rarely get that one right. But you know what? Though I have one finger less than everyone else and suffering from what the world views as a progressive, painful, and debilitating illness, life is still pretty good.

Rhona MacDonald, editorial registrar, BMJ


studentBMJ 2000;08:303-346 September ISSN 0966-6494