About me

Welcome to my blog! I’m Katie. I’m 28 29 (yikes) years old and I live in Devon, England with my boyfriend and two rabbits. I’m a PhD student researching emotional disorders in children. I am a yogi. I have a truly amazing network of family and friends.

On the surface, I probably look like I don’t have a care in the world. But poor health plagues my life. Since I was 16 I have experienced recurrent flare-ups of severe flu-like symptoms. As a teen and young adult, these flare-ups happened every month with my menstrual cycle. For a couple of years while at University, I had a sweet period of remission where I didn’t get sick. That really was the time of my life. Health, happiness, making lots of new friends and studying full-time where my nerdy, highlighter-loving self could flourish.

And then one day, it came back with a vengeance. For the last few years my flare-ups have not been so tightly linked to my menstrual cycle, and I now experience flu symptoms almost every day, to some extent or other. In December 2015 I was diagnosed with chronic reactivating Epstein-Barr Virus (EBV), the virus that causes glandular fever. Epstein-Barr is one of the most common viruses in humans, with around 90% of the adult population having been infected with it at some point in their life. Most people make a full recovery, but a small portion of people experience chronic relapses of the virus. At the same time, I was diagnosed with Polycystic Ovarian Syndrome (PCOS), a common condition that causes hormone imbalances in women.

However, I never quite felt that these diagnoses were getting to the crux of the issue, and I continued to be very sick. In late 2016, after over 12 years of chronic health problems, I was finally diagnosed with Lyme Disease, a bacterial infection spread by ticks. Lyme disease can cause immunosuppression, allowing common viruses like EBV, normally kept in check by a healthy immune system, to reactivate [1]. And, Lyme disease can affect endocrine glands including the pituitary and thyroid, thus impacting sex hormone production [2].

My entire adult life has been filled with a very poor response from the medical community. I have had doctors laugh at me, tell me my symptoms are impossible, tell me I just have depression, and even to “go to Africa and see starving children if you really want to know what sick is”. I know that doctors have an incredibly hard job and that the lines between physical and mental health are complex and muddy. But I also believe that all patients have a basic right to be treated with dignity and respect. And I believe that medicine has become narrow-minded and struggles to deal with complex, chronic conditions that don’t fit one of a small number of diagnostic boxes.

Luckily for me, I have a family who have never once doubted my sickness, my pain, my despair. I am also fortunate enough to have the resources to research for myself, with the help of a (very) small number of supportive medical professionals. Many people with chronic illness are not so lucky, and one day I hope that I might have the health and strength to allow me to campaign on their behalf.

But I’m not there yet, I am still not as healthy as I want to be or as I know I can be (that highlighter-crazy time at Uni is a bitter-sweet reminder of that). I do not accept that I am doomed to live a restrictive, sickness-riddled life. I do not accept that I should lie back and let chronic illness define me.

I am Katie. I am a warrior.

 

References

[1] Stricker, R.B. (2009) Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease. Clinical Infectious Diseases, 45 (2), 149-157.

[2] Burrascano Jr, J.J. (2008). Advanced topics in Lyme disease: Diagnostic hints and treatment guidelines for Lyme and other tick borne illnesses. 15th Ed.