Lauren

Next in our ongoing ‘Your Behçet’s Stories’ series, we heard from Lauren who told us about how she was diagnosed with Behçet’s following a stroke, her love of playing hockey, her ambition to become a paramedic, and much more! Thank you very much to Lauren 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.

Lauren is 28 and lives with her fiancé in Essex, having recently moved from Surrey. She is a Student Paramedic and enjoys playing hockey and being as active as possible. She was diagnosed with Behçet’s in 2012 after having a stroke, but had symptoms from around the age of 11, as well as multiple unexplained hospital admissions throughout her childhood which now make sense.

When and how did you get diagnosed with Behçet’s? 

When I was younger, I had a lot of headaches, joint pain and mouth ulcers and had hospital admissions with these. I was just generally unwell with no symptoms to point to anything obvious. It was always put down to a viral illness and never investigated further. I had my first genital ulcers at 18 and my GP at the time just assumed that it was a Sexually Transmitted Infection (STI) rather than anything else. I had a stroke in September 2012 and was initially left completely paralysed down my left-hand side, and had to learn to walk and become independent again. When they were trying to come up with reasons as to what had caused this, my consultant asked about other symptoms I had suffered in my life and thought it might be Behçet’s disease. Then I was referred to Dr Kidd who diagnosed me with Behçet’s. At the time, my Behçet’s was relatively well managed and it is only really in the past 5 years that my symptoms have become a lot more noticeable and I was referred back to the London Centre of Excellence and started on different treatments.

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

Living with Behçet’s is a bit like a rollercoaster where you don’t know when the ups and downs are going to be. For me, one of the most difficult parts is the unpredictability and having some days which are a lot better than others. A lot of people don’t seem to understand it as I find that I can look quite ‘well’ despite suffering from a range of symptoms. You have to learn to trust in your body again knowing that there will most likely be another time when it is going to let you down. Symptoms aren’t always visible and range from one person to another so it can be quite lonely and overwhelming at times when it feels that nobody else understands.

What is the most frustrating aspect of having Behçet’s and how do you overcome this?   

I have got a lot better with this but, for me, the most frustrating part is not being able to do everything that I want to do and comparing myself to other people without Behçet’s. It is easy to forget sometimes that I am not going to always be able to keep up with everyone, but I think I do pretty well. Getting back to playing hockey was hard after a few years out. When my Behçet’s had become more active, I strived to play as well as I used to, despite the effects of fatigue and pain, but it wasn’t always possible. I have learnt that I need to listen to my body and sometimes that means having a day of full rest rather than going for a run or playing sport. It’s tough as I am someone who likes to be on the go 24/7, but I can’t. However, it’s something I am getting better at and I try not to compare myself to my partner or other people.

How do you manage your condition alongside being a student Paramedic?   

I am not going to lie; this is incredibly tough and has been made even harder thanks to the pandemic. I was set to graduate in a few months, but this has been pushed back as I haven’t been able to go out on the ambulances since March 2020 due to being too high risk. I am on azathioprine and adalimumab, which means I am in the shielding group, so understandably it is too dangerous to have a role where I am patient facing. So many people have told me to give up, but this is my dream. It is something I love, and I know that I am good at it. I have also worked so hard to get to this point that I wouldn’t give up. The reason why I have always wanted to be a paramedic is that in the past I have experienced both some very good but also some awful pre-hospital care. The majority of the paramedics, nurses and doctors I have seen throughout my lifetime have all been incredibly knowledgeable, but I so desperately wanted someone to really get what I was going through. I wanted someone like me. I know that there are going to be times where Behçet’s gets in the way and that it does make shift work very tiring and challenging but I feel that I have developed a relatively good routine that involves making sure I rest and recover properly and look after myself when I am working.

We know that you are keen on exercise as you took part in the 2020 Bike for Behçet’s challenge, for which we are very grateful! How has exercise helped you?  

Exercise is so important to me and always has been, but at times it has been about adapting to what I can do. I loved the Bike for Behçet’s challenge that we did, and I love anything that pushes me. I thrive off competition and having a challenge, but I did have to remind myself that rest is just as important. One of my biggest passions is playing hockey. I love being part of a team and to me, it doesn’t even feel like exercise. Exercise is also incredibly important for my mental health as it always makes me feel better. Even just a walk along the beach and getting out the house can clear your head and make you feel like you have achieved something. I have recently got a paddleboard, so I am excited for new adventures.

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

Listen to your body. It is okay to need rest days and to have days where you are in bed or don’t leave the house. Don’t feel guilty about them. They are just as important as they allow your body to recover. The Behçet’s UK community has been a lifesaver for me as it makes you realise that you aren’t the only one going through this, and it’s really nice to meet other people who understand what you are experiencing. The staff at the Centres of Excellence are also fantastic (both clinical and non-clinical) and they will most likely be able to help you if you have any queries or concerns.

What is your proudest achievement to date?  

As soon as I started to learn to walk again after my stroke, I thought it was a great idea to sign myself up for a 10km race. So, less than a year after my stroke and having had to learn to walk again I ran the London Bupa 10,000 in just over an hour. A few months before I didn’t think I would ever have been able to do this, so crossing the finish line was such an achievement.

Thank you to Lauren for answering our questions!

Interview published 26/02/2021

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!