Bethany

Next in our ‘Your Behçet’s Stories’ series, we heard from Bethany who told us about how her symptoms started when she was a baby, but despite years of ill health and hospitalisations, she has gone on to have a successful career in social work. Thank you to Bethany for sharing your story with us. If you’d like to take part in the series as well, the details are at the bottom of the page.

Bethany lives in the North East of England with her mum and was diagnosed with Behçet’s at the age of 12 after suffering from symptoms since being only 6 weeks old. Despite losing a lot of her childhood years to the condition with long, frequent admissions to various hospitals across the country, including in Newcastle, Liverpool and London, which had a huge impact on her school and university attendance, she went on to obtain both BA Hons and Masters degrees, and is now a Child Protection Social Worker. Bethany feels that her experiences have helped her to be a more resilient person.

When did you first experience symptoms of Behçet’s and how did your diagnosis come about?

I first experienced symptoms at the age of 6 weeks old. I was losing more and more weight, I was failing to thrive and had horrendous ulceration in different parts of my body. From that point on, I was hardly ever symptom free. My main symptom was mouth ulcers, often up to 100 at any one time. I was unable to eat or talk due to the severity of the ulceration to my mouth and throat. In the end this meant I had to be tube fed via a gastrostomy in my stomach as my weight had reduced to only three stone when I was 7 years old. Other symptoms included joint pain and arthritis as well as debilitating migraines. Behçet’s is a vascular disease meaning it can affect anywhere in the body where blood flows, so pretty much anywhere can become inflamed and painful. Behçet’s was queried a couple of times first when I was around three and then when I was 6, but we were always told it couldn’t possibly be Behçet’s as “children don’t get it”. Eventually, I was referred to Professor Fortune at The Royal London Hospital when I was 12 years-old. After years and years of fighting for answers, I was given a diagnosis of Behçet’s and treatment commenced the very same week.

It’s quite unusual to receive a Behçet’s diagnosis as a child. What did it feel like to receive the diagnosis at such a young age? Were your school friends and teachers understanding of your condition?

To receive the diagnosis when I was 12 felt like a complete weight lifted off our shoulders as we had gone round and round in circles for so many years. To finally get answers and the prospect of treatments that may relieve the symptoms and pain felt like a miracle.

I had missed a lot of school as a child due to the pain I was in, with my attendance sometimes reaching as low as 45%. A lot of teachers were understanding at first but after a while, they expected me to be back in school and didn’t understand the “chronic” nature of Behçet’s and how sometimes the symptoms just didn’t go away, and it was like one constant flare-up that never ended. Teachers would make comments such as “Try hard not to be poorly tomorrow as you need to be in” as though I had any element of control over the illness.

Having Behçet’s has impacted massively on me socially as missing a lot of school meant I missed a lot of time with my peers and was often excluded from parties and social events. This really affected me the older I got as the emotional impact was a lot greater, however I now have some great friends who I have met through university and work and they have been very understanding and supportive.

How would you describe what living with Behçet’s is like to someone who isn’t familiar with the condition?

If I could describe living with Behçet’s in one word it would be “unpredictable”. Behçet’s has a mind of its own and you never know what is coming next with it. Behçet’s has often been described as living with MS, Crohn’s, lupus and arthritis all at once and that is exactly how it feels on the worst days.

You now work as a Child Protection Social Worker. How do you think your difficult experiences as a child with Behçet’s have helped you to thrive in this kind of role?

Growing up having to manage a chronic illness has really helped to make me more resilient. Like Behçet’s, social work is full of unexpected twists and turns meaning you don’t know what is going to happen from one minute to the next. I haven’t given up easily and if I know I want something I won’t stop until that goal has been achieved. I like to think that this is the same within the work I do, I don’t stop until I know I’ve done everything I could possibly do to make a child and young person’s life better in whatever way that might be. I mirror that in the work I have done with children, teaching them that just because something seems impossible doesn’t make it impossible if they want it enough and have the right support around them.

How do you manage your symptoms day-to-day and/or your flares, and do you have any tips for others?

Day-to-day I try and make sure I have enough rest which is often difficult as anybody who knows me knows I like to be on the go almost constantly, but I’ve had to learn to take time out to relax otherwise it really does catch up with me. I also try to keep on top of symptoms by taking regular immunosuppressive medication; I receive Infliximab infusions every 6 weeks at the Royal Victoria Infirmary in Newcastle and without them, I would be back to square one so I really am thankful for our NHS.

What support do you find the most useful?

The support of my mam has undoubtedly been the most useful support I’ve ever had. From day one my mam has advocated for me, from fighting for a diagnosis to fighting for the funding needed for the treatment I receive. I owe so much to Professor Fortune at the Royal London Hospital as her careful clinical oversight has been incredible; I still have hospital appointments in London around twice a year which my mam and grandparents have always supported me with whether that be travelling down with me or supporting with the financial implications the appointments have.

Do you have any advice to offer to children/young people who are experiencing Behçet’s symptoms?

Don’t give up; it took 12 long years of pain and constant flare ups before I received my diagnosis but there are answers and new treatments becoming available all the time so don’t give up hope. To the children who are struggling socially and emotionally because of the impact Behçet’s can have, keep going as it really will make you more tenacious and resilient in the long run even if you can’t see that right now. 

Thank you Bethany for answering our questions!

Interview published 17/06/2021

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 particular tips for managing your condition day-to-day that you would like to share to help others, or you might simply like to tell us your story of diagnosis or about a recent fundraising event you’ve been involved in. 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!