Meet Rachel, a 26 year old newly qualified resident doctor, who also has Addison's disease. Known online as the Friendly Shark due to her love of open water swimming, Rachel has begun sharing her journey online through her series ‘Face to Face with The Friendly Shark’. Read on to hear Rachel’s story.

Rachel’s Story

I was in the bread aisle in Asda. When I received the life-changing email. At that moment, I felt the weight of the last 8 years suddenly lift from my shoulders. I could finally let out that breath I had been holding for 8 years: 8 years of studying with, living alongside, fighting against and advocating for, Addison’s disease and I had finally passed my last exam that made my dream come true. To be a doctor. 

Life with an invisible illness

8 years ago, 1 month before I started my studies at medical school in St Andrews, I was diagnosed with Addison's disease. Since then I have taken up open water swimming, taken time out from my studies, started my blog ‘The Friendly Shark’, taken part in a 2-mile swim in Loch Lomond raising nearly £2,000 for the ADSHG, graduated with my bachelor’s degree in medicine, moved cities, started the clinical half of my degree at Glasgow university,  was forced to repeat a year due to ill health, became an ambassador for Medics 4 Rare Diseases (a charity aimed at encouraging medical professionals to consider rare diagnoses in their practice), started an Instagram series called ‘Face to Face with The Friendly Shark’ answering any questions people might have about the condition, signed up for my first 5km swim and finally, graduated as a fully-fledged doctor.

When I see it written out it all looks quite impressive. But what you might not see when you look at my life is the hundreds of thousands of tablets swallowed, the litres of tears cried, the hours spent in bed, the terror felt at losing control of my body as I went into yet another adrenal crisis and what seems like the endless search for life to be easier. Anything that would make the burden just a smidgen lighter to carry.

At my 5-year diagnose-iversary I wrote a letter to the ‘me’ I was before I became unwell. I said:

“I want to write and tell you that it gets easier. But it doesn't…. It just gets different. Other things will come along and challenge you. Other things will come along long and fill your life with joy.”

Coming to a point when I can give myself the grace to feel upset and angry at the injustice of being unwell and the time to pick myself up one piece at a time has been a long, beautiful and essential journey.

‘The Friendly Shark’ becomes a Doctor

Medicine is a gruelling degree. And if you are disabled it adds a whole new level of difficulty to it. I like to think of it as if my starting blocks are just set a little bit further back than everyone else’s. I just have that little bit further to push to get to the same destination as my peers.

Like many, I felt like my diagnosis of Addison’s disease had stripped me of my identity. But open water became a lifeline for me throughout my degree. The water was a place of solace, comfort, distraction, community, empowerment, strength and paradoxical warmth. Often, I felt like swimming was all I had.  Being in the water, being The Friendly Shark was the only time I felt truly confident.

But I still didn’t feel like I was a ‘good enough’ medical student. I had reclaimed that part of myself but I wanted to be more than The Friendly Shark. Maybe a friendly Doctor?

"As a disabled doctor I have firsthand experience of navigating the nuances and the consequent complexities of living with a disability. I feel now that I can deliver exemplary patient centred care as a result of experiencing the good, the bad and the ugly of healthcare provision as a patient myself."

I have been spoken over, not listened to, ignored and even shamed when trying to advocate for myself. I know that this can be one of the hardest things as a patient. I hope that my experiences mean that I can not only act as a valuable advocate for patients but also learn how to better advocate for myself.

So, for anyone thinking that their disability is a stumbling block I am living proof that it absolutely is not. It will be hard, but you are better equipped than most to deal with all the world has to throw at you.

A change in treatment

After writing my thesis in 2020 on the impact of different types of treatment for Addison’s disease on quality of life, I began to realise that I had been tolerating a very poor quality of life. I suddenly realised that experiencing 3 or more crises a year was, in fact, not normal. Armed with my research and knowledge of my own condition, I pitched the idea of different methods of treating my condition to countless doctors who all said they weren’t able or willing to stand in my corner.

Until - 2 weeks after becoming a doctor. My consultant says to me “I think you deserve to feel better.” - words that every person with a chronic illness longs to hear. My cortisol pump is in the post and I am due to be fitted with it in the next month. I truly believe that this change in my treatment may be the answer for me. But I would be lying if I said I’m not nervous. What if this is not the answer? What if getting used to it is too much? Will I be able to get used to it before I start work as a doctor later this year? How do I swim with it?!

Well, let’s find out together shall we!

Behind the research: cortisol infusion pumps

The future of ‘Face to Face with The Friendly Shark’

I will be documenting every step of my journey towards getting a pump and working as a junior doctor with Addison’s disease on my social media. Please follow along to see how it goes!

Addison's Admin

How do you remember to take your tablets? 

I have found that having consistent times each day that I take my tablets is the best way of remembering them. I also have alarms to remind myself to take them on my phone and my smart watch just in case! 

How do you carry your injection kit?

I carry my emergency injection in a few different forms with me at all times. I have one kit that lives in my bathroom, one that stays in my car, one that comes with me in my scrub pocket or hand bag and finally, one that I take swimming with me. My swimming one lives in a special waterproof case and the others in a simple mini-Tupperware! They all carry roughly the same things with 2 vials of hydrocortisone, 2 sets of syringes, some oral medication and the steroid card from the ADSHG website as well as a list of all my emergency contacts. 

#ShareYourKit

What type of medical alert identification do you have?

"Medical IDs have been essential for me to feel safe when I'm out and about on my own, especially when I'm swimming!"

I have an ID from a company called RoadID which fits onto my smartwatch and is super durable. I have another one from the same company that attaches onto the laces of my shoes which I often wear at work as I cannot wear my watch. I use the bracelets from the ADSHG when I am not wearing my watch (and not in a clinical environment) and have one attached to my rucksack when I'm at work to let people know there are steroids inside.

I also have a medical alert on my phone which has much more detailed information on it. One medical alert I would like to get but have not yet is a seatbelt cover for my car, I think this is a very clever idea!

Author: Rachel Bolwell Instagram: @thefriendlyshark X/Twitter: @_friendlyshark TikTok: @the.friendly.shark_ LinkedIn Read Rachel's Blog

A shorter version of this article was first published in the Summer 2024 edition of the ADSHG magazine.

 

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