Lessons in Life after Diagnosis

By Philippa Wimbledon (she/her)

Sometimes with chronic illnesses it can take months or even several years to get a diagnosis. In my own experience it took six years before it was officially noted on my medical record. The average time with someone with my condition is eight years so I always count myself as one of the lucky ones. This could be for a number of reasons; many illnesses can be hard to diagnose due to symptoms, tests or sometimes it can be the case that GP’s aren’t experts in specific illnesses. I’m a big believer in following your intuition and your gut feeling. It can be hard when you know that something isn’t right, but you can’t get anyone to “officially” agree with you. Before a diagnosis it can feel a lot like you’re being gaslighted. You start to question if there really is anything wrong with you or whether everyone else is right.

However, life after a diagnosis can be just as confusing. In my own experiences having my illness diagnosed by a doctor and officially charted on my records felt like the world had stop. Suddenly the last glimmer of hope that I was wrong, that I would wake up one day and be cured was gone. Being diagnosed was the best and the worst thing that happened to me. I felt lost and disconnected to the life I had previously. I’d worked so hard and long to get the diagnosis that I hadn’t stopped to think about what I would do next. The sense of loss was overwhelming; not only was I grieving for the life that I knew would now change but also because it felt I had nothing left to fight for. At the time, I felt so alone for months afterwards – I now know that this isn’t uncommon.

Living with an illness can be bad enough, with all the symptoms that can come with it. In my case, it’s bad abdominal pains, heavy bleeding and severe tiredness. However, it’s the diagnosis that can lead to feelings of anger, frustration, and fear to name a few. But, it’s not all doom and gloom. Eventually, the fog lifts and more positive emotions can take the lead such as empowerment, relief and determination to move on. You can then focus on finding the best treatment for you and keep going.

Most diagnosis come with the underlying message that your life is about to change. This can mean small changes like diets and exercise to medication and surgery. This can be either welcomed with a renewed sense of determination that things will change for the better or it can be a bitter pill to swallow (sometimes very literally!) In my case, it started with mediation. When I was diagnosed, I was told to try and stay as calm as possible as stress can make things more painful – this was going to be almost impossible in my final year of University. So, I had to work hard on finding ways to keep myself calm. I also had to change my diet slightly. There’s a lot of research to say that caffeine isn’t good for someone with my condition, a hard blow for someone with a love of coffee. So alongside medication changes and surgery, I couldn’t even have my favourite drink to keep me going.

Experiences of the public health system can be both lifesaving and upsetting for anyone. I’ve met the worst GP’s but the kindest sexual health nurses throughout my various years. This can mean that your experiences after a diagnosis may be different every time. I (naively) thought that once I had my diagnosis, it would be like the Red Sea parting and that I would no longer be questioned on it by other healthcare professionals. I was wrong. I was still having to fight to change my medication even after having multiple surgeries to diagnose me.

A year on from my diagnosis and things are a lot more positive. We live in an age where information is so accessible which has been amazing and made me feel as if I’m able to take control of the illness rather than it controlling me. I always thought of my illness as being part of me, something that I could never shake off, but being in contact with other people experiencing the same things has given me a much more positive outlook. This illness is an extension of me, but it doesn’t define who I am.

Philippa Wimbledon (Twitter - @PhilippalouiseW)

Bio: Philippa is a recent Multimedia Journalism graduate from the University of Northampton. She has experience in magazine articles, radio presenting and the occasional TV work. Her usual topics of interest are sexual health, feminism and anything relating to the South-West.

(Originally published 2/08/20)