Fay

Next in our ongoing series of ‘Your Behçet’s Stories‘, we heard from Fay who told us how she manages working full-time alongside having a chronic condition, her involvement in research studies into Behçet’s and much more. Thank you to Fay for sharing your story with us.

We are looking for more participants for this series so if you would like to take part too, you’ll find the details at the bottom of the page.

Fay lives in Poole, Dorset with her husband David and three children; Ffion, Hannah and Dan and her two cats. She loves music (especially the Red Hot Chilli Peppers), reading and spending time at the beach with her family.

When did you first experience symptoms of Behçet’s and how did you get diagnosed?

I was at University in the early 2000s when I realised there was something wrong with my health.  I was falling asleep during lectures and was struggling to find the energy to walk even short distances. I was told I had glandular fever and a few months after this, I developed all the main symptoms of Behçet’s disease. This started with genital ulcers which my local doctors would not accept were not herpes despite repeated negative tests and escalated into erythema nodosum, mouth ulcers and severe joint pain to the point where I could not walk. In desperation, my mum called an emergency GP one night who couldn’t diagnose the issue but did try me on steroids. Within two weeks, I was almost back to normal, but it didn’t last long.

Unfortunately, none of the doctors I saw recognised what was wrong and I experienced increasingly bad symptoms throughout my 20s and 30s. Despite this, I joined the police and worked mainly in high stress, uniformed roles, constantly wondering what was wrong with me when my disease flared up. 

By 2016 I was extremely unwell and was sent to the Force Medical Officer. His advice was to see a London doctor and I found myself referred to a private neurological consultant soon after this. He told me ‘I think I know what is wrong with you, but to be sure, you need to see a consultant named Dr Kidd.’  A week later, I saw Dr Kidd at the Royal Free, I got referred to the London Centre of Excellence and diagnosed with Behçet’s.

What have you found to be the most difficult thing about having Behçet’s?

At first, I found the unpredictability of Behçet’s to be one of the hardest aspects to manage. Feeling relatively well one day and then struggling to complete even the most basic of tasks the next was tough, particularly with young children who didn’t understand the reason why. Another thing that was difficult were the reactions of other people. I often felt there was an expectation placed on me to get better and a lack of understanding that this is a chronic condition with flares and remissions.

What is your job and how do you manage your work alongside having a chronic condition like Behçet’s?

In 2021, I left the police and joined Bournemouth University as a lecturer and a researcher in psychology.

I have been at BU studying since 2017 and, as a student with a disability, I found the University to be incredibly helpful. I was supported via a disabled student allowance and the University’s additional learning support services. This gave me access to equipment and software such as a specialist chair and dictation equipment which I still use now I’m a member of staff. 

This is the first full time role I have had since being diagnosed with Behçet’s and I was a little apprehensive about how I was going to manage. As my role is quite flexible, I can work from home on some days which has really helped, and I have an amazing line manager who helps keep my workload manageable. I try to plan my work on a weekly basis, so I know what I am doing in advance, for example, if I have a teaching heavy day, I’ll plan a couple of paperwork days at home afterwards.

We know that some time ago you were involved in a research study into Behçet’s and its impact on intimate relationships in women. Would you like to tell us more about how you got involved in this study and what was the outcome?

Although my main area of research is police corruption, I am also involved in researching the psychological impact of Behçet’s disease. A few years ago, I was struggling with intimacy due to Behçet’s and I searched for published research which might help me understand why or offer some solutions. When I saw there was very little, I decided to investigate this with the help of Dr Emily Arden-Close, a health psychologist at Bournemouth University.

We interviewed a number of female Behçet’s patients to explore how symptoms and medication can impact intimacy and also, things which might be able to help. We found that the condition can present many barriers to enjoying sex and have recommended further information is provided to patients in addition to more open discussions with doctors. (Read the study at https://journals.sagepub.com/doi/full/10.1177/1742395320945210 ) 

Emily and I have also conducted research into living with Behçet’s through the Covid-19 pandemic which will hopefully be published soon and, another project into misdiagnosis of Behçet’s.

In terms of self-care what things do you find to be the most helpful in managing your condition?

Managing stress as best as I can seems to be the best way I can care for myself.

I like to spend time with my family doing things which make us all laugh – we play a lot of fun board games, and my son likes to play computer games with me.

I am very lucky to have a good friend with Behçet’s living five minutes from me. Although we always laugh about the fact that all we ever do when we meet is to compare symptoms, it is great to have a friend who completely understands what is like to live with this condition.  Maybe one day, we’ll manage a conversation about something else though! I have another friend with Behçet’s who I met when we had drug infusions in London together. She is not local to me, but we keep in touch over Whatsapp.

Another thing which I find fun and a good way to de-stress is cross-stitching. I find it really relaxing and a great distraction if I’m in pain or worrying about something.

We know that you have previously attended one of our Friends and Family Days. Do you find it helpful to connect and meet up with others who have Behçet’s?

Knowing others with the condition is really important to me and has been incredibly helpful. Over the course of my research, I think I have spoken to at least 20 individuals with Behçet’s and each time, it has been such a positive experience and one which really reminds me that I am not alone with this condition. In fact, the research assistants who worked with me told me how surprised they were at the amount of laughter and positivity running through the interviews – even when discussing the horrendous symptoms.  It made me feel really proud of the Behçet’s community – we live with a rare and unpredictable disease, we often need to take medications with extreme side effects and, even when talking about all of this, there is a core of strength and resilience running through us.

Do you have any advice for those who are newly diagnosed with Behçet’s?

My best advice to anyone newly diagnosed with Behçet’s would be to remember that you are not your disease, and it doesn’t define you. I lost sight of this when I was first diagnosed. All I felt at first was relief that I had an answer but then I felt I was losing my identity to Behçet’s. If you find yourself in that space, reach out to the Behçet’s community via Behçet’s UK or the Facebook pages and know that there are people out there who can help and support you.

Thank you to Fay for answering our questions!

Interview published 21/09/22

Could your story help others?

We would like to share your personal experiences of diagnosis and living with Behçet’s, and we’d like to hear from a wide variety of patients, of all ages and backgrounds. We’d also like to hear from carers and/or family members of those affected by the condition. 

If you’re a patient you might have some useful tips for managing your condition day-to-day that you would like to share to help others, or you might like to tell us your story of diagnosis, or about how your Behçet’s has changed your lifestyle or your work life. If you’re a carer or family member of someone affected by Behçet’s, you might wish to share your personal experiences of caring for someone with a rare condition.You can share as much or as little as you want with us.

If you are interested in taking part and would like to know more please email Deborah at info@behcetsuk.org

We look forward to hearing from you!