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Posted on 9 Aug '17

Tackling a PhD with a Long-Term Health Condition – One Student’s Story

Every PhD researcher faces their own individual challenges, but these can also fuel a student’s dedication to their project. Despite suffering from chronic joint pain, Tamar Beck is now in the first year of a PhD researching the treatment of patients with conditions like her own. In this post, she shares her story.

I have always wanted to do a PhD and I’m so glad to now be pursuing that dream. I didn’t go straight into postgraduate research. Instead, I trained and worked as a nurse for 15 years, home-educated my sons, then worked for social services, charities and in NHS commissioning.

The NHS supported my MSc in healthcare management which I loved. This led me to wonder if I could undertake PhD research. The National Institute for Health Research (NIHR) offered PhD scholarships for those working in the NHS so I initially explored this option.

However, my search for a PhD faced an additional challenge.

Facing my challenge

I have Ehlers Danlos Syndrome, a connective tissue disorder. This causes systemic issues with connective tissue throughout the body.

The most common symptom is continuous joint pain as the tendons and ligaments are more stretchy than normal. The location of this pain varies for different patients. For me, the worst issue is chronic pain in my feet and hands. (As it is systemic, I also have pain in many other joints, and problems with blood pressure, digestion and fatigue).

I loved my job as project manager in a Clinical Commissioning Group, developing and supporting community services for people with long-term-conditions and mental health issues. The role involved travelling around the county for meetings almost daily, many hours of typing reports and emails, and non-stop concentration racing to meet deadlines.

However, I found that as my health deteriorated and the pain increased I could no longer keep up. I hoped to continue until I could apply to NIHR for the PhD scholarship, but I was unable to remain at work.

Making it through to my PhD

Fast forward to a year later and, through dogged determination, an ability to navigate the system, and a very supportive university who were interested in my research proposal. . . I have made it. I have now been working on my PhD for nine months.

It hasn’t all been easy: I’ve just had to change to part-time as I was unable to sustain full-time study, but I’m here, I’m doing it. I love it. And I will definitely complete it! Then I will continue to research, hopefully working within the same university.

My project explores health professionals’ support of patients with chronic pain. As a health professional and a patient with chronic pain, I am the ideal person to undertake this research.

My supervisor is great, I have made some great friends and become an active member of the university research hubs as well as participating in extra-curricular activities, such as the university gospel choir.

Managing my condition

My health condition means I must attend quite a lot of hospital appointments and physiotherapy sessions. On some days I experience too much pain or fatigue to go out or to do any work. This is actually easier to manage whilst studying than when I was at work, as I can be more flexible (although I have missed some seminars and meetings).

As a wheelchair user, I have also had to check access to rooms, and discuss my needs at conferences. I have found Disabled Students' Allowance helpful, as well as the student wellbeing service, although there are improvements that could be made to the university access and more thoughtfulness in disabled parking spaces and information. This has led me to apply to be disability student rep for next year in order to take responsibility for improving things.

My advice to others

Speaking from experience, my advice for anyone contemplating PhD research with a long-term-condition is to go for it!

So far, I have found it to be a great distraction from my health needs, the monotony and disappointment in attending hospital appointments, and the failure of my body to allow me to do things I want to do at times.

Carrying out original research is great for self-esteem, a great way to meet people passionate about similar subjects, and those passionate about completely unrelated subjects.

I have to remember the importance of pacing myself, planning for deadlines, and timetabling recovery days after a few days at a conference. As my physical disability is obvious I also feel I am contributing to increasing awareness that people with disabilities and/or long-term-conditions can contribute to society in meaningful ways.

On the whole, studying a subject I am passionate about, exploring philosophical arguments I had little knowledge about previously, and preparing to interview health professionals is very exciting. I am so glad to have this opportunity.

As some research shows, people with chronic pain cope better when they have achievable goals, and, despite the challenges I’ve faced, my goal definitely feels achievable.

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