Waiting outside Addenbrooke’s hospital on Tuesday, after yet another metabolic bone specialist had been unable to explain the excruciating pain in my previously ‘good’ ankle, it was hard not to want somebody to blame. The latest specialist had been kind and honest, but still I blamed her for not being able to help. If only she had known what was wrong, there would, I was sure, have been some treatment, cast or surgery which could have fixed me. So I blamed her, in the same way that I so often blame my back pain on my spinal surgeon, or my leg pain on the various doctors who, two years ago, did not spot a severely stress-fractured talus before it was too late.
The objective truth is that I have a rare bone condition which, due in part to its coincidence with other medical conditions, is currently presenting itself in a very unusual way. Osteopenia (low bone density) means my x-rays are difficult to read at the best of times, let alone when I have no clear break, only two unidentifiable white patches around the ankle which match the area of my pain. As much as I wish there was a simple answer, a definite solution, to each of my weird and wonderful complaints, the fact is that there was no clause in Tuesday’s specialist’s medical training which taught her to deal with whatever I’ve got going on – and nor could there have been. My body has spent much of its short life surprising experts by playing unexpected tricks at unexpected times. It is not the specialist’s fault that I will now spend weeks waiting for a CT scan, followed by another few weeks’ wait to get the results. Realistically, even when I do know what the problem is, there is unlikely to be a clear, easy solution.
None of this is my specialist’s fault and, until recently, I would have claimed that none of it was my fault, either. However, Tuesday’s appointment also revealed another home truth which I had been attempting to deny.
Since the age of nine, I have lived with anorexia, in a variety of forms and severities. I’ve had phases of eating almost normally, pushing guilty thoughts to the back of my mind, and I’ve had phases of living on two or three meals a week, spending days in total starvation. Twelve years on, my Eating Disorders Unit have teamed up with my bone specialist. Noting my weight gains and losses in correspondence with my Dexa (bone) scan, Tuesday’s specialist declared that there was no doubt in her mind that my current fracture cycle is a direct result not only of osteogenesis imperfecta, but also of prolonged malnutrition. My legs are no longer strong enough to walk on, and I’ve almost certainly done this to myself.
The news was hardly a surprise. For years, doctors have told me that my eating patterns would ultimately have a serious impact on my already brittle bones. From an anorexic perspective, convinced food was for the weak and that anyone who thought it a necessity was a fool, this was an easy claim to dismiss. Now, the only long-term medical prediction I’ve ever really been given has come painfully true.
It’s difficult when there’s nobody to blame. It’s even more difficult when the only person who deserves blame is yourself. Ironically, my anorexia is rooted in the desire to control my uncontrollable body; when my body has been particularly painful, the anorexia has worsened. I know this ought to be a wake-up call to put weight on, but I am torn between the desire to get better, and the illogical yet total conviction that everything would be better, if only I was thin.
I have been in charge of my own healthcare for a long time, and much of the past four years has been spent researching and organising referrals to the best specialists I can find. It is only now that I am beginning to accept that, with the best will in the world, even the greatest experts with the most cutting-edge treatments cannot ‘fix’ me. It’s not enough to turn up to every appointment and take every drug. Health starts from the inside out. I was born with a body which doesn’t work like it should, and it’s up to me what I do with it.
Let me tell you, it’s a lot easier said than done.