By K W Warburton, The Reluctant Spoonie

This series outlines my first five years of living with Postural Orthostatic Tachycardia Syndrome (POTS) from initial onset to recovery and more! Get my Guide to Living with POTS here which contains tips and tricks for living well with POTS. As well as three personal stories from real people who live with POTS.

Read Part 1 here; part 2 here; part 3 here and part 4 here

Living with POTS Part 5: Accepting My New Life

My 5th year living with POTS came with a whole host of new challenges. I assumed that everything would be better now that I was on a treatment that worked. I had my life back on track and I was looking forward to working on my Master’s thesis.

One thing that my doctors had always neglected was my mental health which reached crisis point at the start of the year when I was subjected to medical negligence yet again. Read all the harrowing details here (Trigger Warning for medical negligence/ trauma).

As my doctors were not prioritising my mental health care, I decided to seek help myself. I tried a self-referral through the NHS, but it has a 6-month waiting list. As a student, I had access to free counselling through my university, so I made an appointment with the student mental health service.

I started a 6-week course of Cognitive Behavioural Therapy (CBT) for my medical PTSD and anxiety. Which I did alongside my Master’s thesis work. This made for a gruelling summer for me. About halfway through my CBT course, I started feeling the positive effects. I could identify my triggers and found ways to manage my anxiety through spirals.

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Even though I was asymptomatic with regards to my POTS at this point in time, I still had a long way to go with regards to secondary health effects such as muscle weakness and mental health conditions.

Check out a week in the life of a Student with POTS here

In September, I submitted my thesis and I also completed my course of CBT. I had also changed one of my medications for personal reasons and was now taking a beta-blocker which had the bonus effect of helping with my anxiety as well as my POTS symptoms.

I had also just begun my graduate job search which wasn’t going well for several reasons. Brexit meant that scientific funding was under threat and PhD listings were sparse. Additionally, I still hadn’t regained my stamina, so full-time jobs were out of the question. I was in a position that many disabled graduates find themselves in: I have a good degree, but I can only work part-time, where are the part-time graduate jobs?

I applied for many graduate-level jobs and only got interviews when I ticked the ‘guaranteed interview for disabled candidates’ box’. Quite often, these felt like pity interviews where they had no intention of hiring me. I widened my job search and applied for jobs that did not require a degree and still experienced barriers. Inflexible interview times, endless application questions and stages. Online tests that were timed and I couldn’t get extensions on.

In the end, I had to stop my job search as it became too stressful for me. I got a new voluntary job at a local community centre. I took this time to finish writing and published my Guide to Living with POTS.

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Get my Guide to Living with POTS here

Even after 5 years of living with a chronic illness, I am nowhere near getting my ‘old life’ back. It took me a very long time to accept that I had a long-term illness and I’m still learning how to incorporate it into my life. I am not hoping to ‘overcome’ my disability because that is not possible for me or anyone who lives with an incurable condition. My hope for my next 5 years with POTS is that I find an accessible job that fits in with my chronic illness lifestyle.

What I learned during my 5th year with POTS:

  1. Having a diagnosis doesn’t protect you from medical negligence
  2. There are many barriers to getting a job as a disabled person
  3. Living with a chronic illness is a continuous learning process
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