• Eliza Llewellyn

My Chronic Illness Story

TW: ED, grief, infertility, chronic illness

A bit of a different post from me today, but I hope that I can help someone in the same boat.

In August 2020, I was finally diagnosed with irritable bowel syndrome (IBS). My GP said that I’d most likely been suffering with it since I was around 14 but my symptoms had began to debilitate me due to the stresses of the pandemic.

I’ve always struggled with my relationship with food. My Grandma says how I’d quite literally stick my fingers down my throat whilst I was still young enough to be sleeping in a cot - something that became an everyday ritual for me between the ages of 14-17. So, I found it particularly difficult to work towards regulating my eating and trying new foods.

16 months later, I am in a far better place with both my IBS and relationship with food. However, it took me a while to admit to myself that something still wasn’t quite right.

My migraines will getting worse and more often, so a nurse moved me from the combined pill to the mini pill. I started to wake up with clumps of hair on my pillowcase. I then had a pretty bad IBS flare up that lasted two weeks. I also had a new symptom - chest pain and an odd feeling in my heart. I finally reached out to another GP, who when I told her I was about to lose a parent, said that it was ‘stress and food poisoning’.

I put everything to one side so I could focus on spending time with my family, until March 2021 when I lost my Grandad and I moved house in the same week. I moved to a different GP surgery where I was referred to the cardiologist.

Having finally seen the cardiologist in September 2021, I was diagnosed with ectopic heartbeat. I am currently on the waiting list for a heart tape.

A week later, I woke up in the middle of the night with the most excruciating pain I’ve ever felt in my life. NHS 111 offered to send an ambulance but I declined as the hospital is a 10 minute drive from home.

When the night shift started I asked if the night gynaecologist would be able to see me soon and a nurse told me the unit were still overwhelmed by A&E patients. So, I self-discharged and was told I’d have the results sent to my GP by the following Monday.

Over the next few weeks I began to become more aware of my symptoms flaring up, as well as new symptoms, and also realising that a lot of what I thought was 'normal', were symptoms that I had been suffering with for years.

I went back to the GP and was told what I was suffering from was suspected fibromyalgia and was going through a flare up after the trauma of losing my Grandad in March and my Chester Dog in August. I am on the waiting list to see a rheumatologist for an official diagnosis. The waiting list for my two local NHS trusts are 19-36 weeks.

In December 2021, my results finally came through for the ultrasound. I was diagnosed with early stage polycystic ovary syndome (PCOS). Not being able to have children is my biggest fear, so hearing the statistics was pretty gut wrenching for me.

If I could talk to the past me, I’d tell her - as cheesy as it sounds, remind yourself of your strength and therefore how well you are at hiding your suffering. Your ability to hide your illness to others doesn’t mean that you’re not fighting a private battle every day. Do not wait on others to validate so that you feel worthy of seeking help. And be persistent!

2022 is going to be about starting the next chapter in my health story by learning more about nutrition, lifestyle and self-help for my chronic illness.