Working as a doctor with a chronic illness
Publication date: 14 Aug 2004
A determined doctor shares her experiences and gives some advice
Five years ago I was an energetic medical student who had just returned from a life changing elective in South East Asia. I thought I was on the path to fulfilling my dreams. Instead, I inadvertently stumbled into dangerous uncharted territory—ill health.
At first I put my worsening myalgia and generalised joint pains down to a change in weather, diet, driving distances—anything. But as the weeks progressed, immense fatigue set in. With a gradual loss of appetite and the subsequent weight loss (great at first) came eye problems and painful lumps on my legs. Then the dry cough became more and more persistent.
According to the rheumatologist, I had reactive arthritis, and I started treatment with anti-inflammatory drugs. According to tropical medicine, I had one of three possible tropical diseases, given my recent travel abroad. The dermatologist wanted a biopsy of my painful shin lesions. The ophthalmologist diagnosed anterior uveitis.
I read a textbook on general medicine, trying desperately to put the pieces of the jigsaw together. I decided that I needed chest radiography, something I hadn't had so far. My wonderful general practitioner kindly arranged for my medical student whim to be satisfied. It turned out that I had gross bilateral hilar lymphadenopathy. I was referred to hospital urgently for further tests and had to go on sick leave from medical school.
It took two agonising weeks to confirm that I didn't have lymphoma or tuberculosis but probably had sarcoidosis, “a multisystem disease of unknown aetiology.” This six word definition was to change my lifestyle, body image, personality, finances, sense of humour, and ability to work as a doctor. I was devastated. I struggled on at medical school, partly in denial and partly owing to dogged determination, until it became apparent that I would have to withdraw from the course.
Symptoms and side effects
I started treatment with high dose steroids and immediately my appetite became voracious all the time. Within four weeks I had put on half a stone (3 kg), had a moon face, and was fast becoming the “lemon on a stick” that is described in textbooks. At every appointment I hotly debated the use of steroids with my ever-patient consultant, and eventually I put myself on my own reducing regimen.
My consultant rode the storm with me patiently but firmly, warning me of irreversible lung fibrosis if I didn't comply with the treatment. So, I reluctantly persisted and my symptoms gradually improved. The visible side effects worsened, and I continued to eat everything in sight.
The shallow and the tolerant
Six months later I restarted my final year at medical school and immediately realised how image oriented society is, even people who are supposedly the most educated, learned, wise, and impartial.
But there were also the kind and the tolerant ones who coaxed, pushed, chided, and encouraged me towards my graduation six months later than expected. I had finally achieved my aim.
Suicide and support
Four months later I felt suicidal, my fragile confidence shattered. I felt bullied by some colleagues but when I faced the “perpetrators,” socially, informally, and then formally, there was denial on all fronts. Seemingly, I was the sensitive one—the steroids were affecting my personality. I should be tougher if I wanted to continue to work as a doctor.
I fought to gain recognition of my differing needs. I managed to secure funding to allow me to work in a supernumerary capacity. I was assigned a mentor, who offered a kind but essentially impractical ear. I asked for a transfer and it was finally granted.
During my final six months as a house officer I received unstinting support from a fantastic group of senior doctors, who also ensured that my educational and training needs were met. I started enjoying my work again and began to feel ready to face the challenges of a hospital career.
Darkness and light
It took me a long time to accept that there isn't a cure for my illness. So, why do I continue working in an often unsupportive environment with unrelenting pressures? The bottom line is that I enjoy what I do. I have worked in the worst possible system with the darkest side of human nature, but I have also worked in the best the NHS can offer with the most inspiring doctors and the best teams. The latter spurs me on.
So, what have I learnt from living with a chronic illness, working as a doctor, and being a patient? I try to achieve a balanced lifestyle and hope the following points may help if you find yourself in a similar situation.
I have adapted.
My illness is essentially “invisible” now and I don't find it helpful to tell my colleagues about it. I don't want sympathy or the inevitable preconceptions about my abilities. I always let occupational health know and leave it at that.
I try to organise health related matters (investigations, appointments, and so on) around my annual leave so they don't impinge on my work schedule.
I try to look after myself, eat regularly, and take breaks because I need to more than most people. I have learnt that if I don't take a break I suffer the next day or, worse, have to take sick leave regularly.
The people who know about my illness are the ones who won't mind seeing me looking and feeling my worst. I relax with friends, but they also know that I won't use them as a constant sounding board. If I did, it would zap their limited energy resources.
I now allow my doctors to care for me and have learnt to become, I hope, a “good” patient; life is easier because of it. Trusting your doctors to make the right decisions for you can be hard (especially when you have access to the latest research), but it is difficult to be objective about yourself.
The BMJ Careers chronic illness matching scheme ( [Link] ) put me in touch with another doctor who also has sarcoidosis. It was such a relief to know that I was not alone after feeling isolated for so long.
I try to enjoy my time off. I used to worry about the future, but now I live for the present and try to make the best of every day. Work will always be there, but for me, my health dictates my ability to do my work and how well I do it every day.
I hope that I am a more empathic doctor and more understanding about what it means to be a patient who feels disempowered and embarrassed by various examinations and investigations. If I am asked to prescribe analgesia, I do so immediately. I'll go back and try to answer more fully the question the patient asked as the consultants were leaving the bedside. I chase results obsessively because waiting for results can often delay the next management step in a patient's care.
Although I get tired, I try to keep my sense of humour within my working philosophy.
The author wishes to remain anonymous but is willing to answer emails from other doctors with chronic illnesses. Please send any correspondence to firstname.lastname@example.org. All these emails will be treated in confidence.