Becca
Next in our interview series of ‘Your Behçet’s Stories’ we caught up with Becca who told us about how she manages her condition alongside being a young mum and working part-time, her love of painting, how attending the Behçet’s UK Wales Support Group Meetings has helped her, and much more. Many thanks to Becca 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.
Becca is 23 and lives in the Neath Port Talbot area in South Wales with her two little boys. She works in her family’s doggy daycare business and loves to paint and spend time with family and friends.
When did your symptoms first start and did it take a long time to get diagnosed with Behçet’s?
My symptoms first became really obvious during my pregnancy with my second baby in 2021. Genital ulcers were my main symptom which led to a lot of STI testing as the herpes virus in particular can be very dangerous during pregnancy so that was their main concern first of all. When herpes was ruled out twice that then led to looking at Behçet’s as an explanation.
Thinking back, I’d always had symptoms throughout my teen years that I didn’t take any notice of at the time as they weren’t too severe. I can remember having mouth ulcers though. I often had a mouth full of them and if I had hurt my mouth in some way you could guarantee it would result in painful ulcers, but being a teen there must have been more important ‘teen troubles’ to worry about so it all just went under the radar until I became an adult and started taking my health more seriously.
It took around 9 months for me to be diagnosed with Behçet’s, which I realise is really quick for people with this condition, and I feel very lucky to have had excellent knowledgeable doctors on my side to take it all seriously and have me diagnosed and treated quickly, which I believe has ensured my quality of life hasn’t been impacted for too long.
What have you found to be the most difficult thing about having Behçet’s?
The most difficult thing about having Behçet’s for me has been the fact I felt quite different than everyone else for a while, and it would get me down sometimes that I didn’t have the same energy as others my age. The ulcers can be really painful and would make it difficult to eat, brush my teeth and use the bathroom. So multiple times a day I’d be reminded I’m not well and that took a massive toll on my mental health for a while. The skin lesions would also affect my confidence when I had a flare up. The condition is not very obvious on the outside as the symptoms are mostly in places others can’t see, so it can be isolating to feel unwell but not look unwell.
Do you still experience flare ups?
I do still have flare ups but I’m still learning when I’m flaring and when I’m not. Sometimes it’s very obvious with skin lesions, painful joints and ulcers then other times I find myself questioning am I flaring or am I just a bit run down or under the weather? The symptoms vary so much I sometimes don’t know if something has another explanation, I just try to take each day as it comes. I’m on medication now which has helped me be well for most days which has been an absolute relief, the symptoms aren’t half as severe or up and down as they used to be.
How would you describe what living with Behçet’s is like to someone who isn’t familiar with the condition?
How I’d describe living with Behçet’s to someone that’s not familiar with the condition is you just never know what’s coming next. One minute you can feel relatively normal and get on with the day-to-day easily, and the next you’ve crashed and can feel every awful bit of Behçet’s with no warning at all.
Do you find it difficult to manage your symptoms alongside motherhood?
Sometimes it is difficult to manage Behçet’s alongside motherhood, I find I can lose my patience a bit faster when I’m feeling unwell and it’s hard to explain to my little ones why. We make sure to make up for those days on the good days. All the different doctors appointments and tests can be hard to juggle around my boys’ lives sometimes too.
How do you manage your work with having Behçet’s?
My work life is easy to manage as my sister and father are my bosses. They are very supportive and often work things around to make it easier for me when it’s needed. I only work afternoons a few days a week and they’ve been really good about it. I’m really grateful to them.
I work with the dogs at the doggy daycare. I find spending time with the dogs can really take my mind off the day-to-day battles. It’s impossible for me to be too sad surrounded by wagging tails and happy puppy faces, they can be really therapeutic for me. The customers are a joy to be around and chat to as well. It’s great to share in the love for their fur baby.
What things do you find helpful in terms of self-care and managing your condition?
I find taking regular time out to relax and unwind helps me to manage my Behçet’s. A healthy work/ life /alone time balance, and good sleep is a must for me! I try to find distractions when I’m thinking or worrying too much and it’s important to me to try and keep a healthy diet and exercise when I can. I like to use resistance bands to exercise and do yoga style workouts. Taking the dog for a walk is my go to when I don’t feel like doing anything too strenuous, and it’s nice to get the fresh air too.
I have been painting seriously since 2020 and it’s been a lot of fun. I’ve been kept busy this year with window paintings for Halloween and my Christmas spaces are starting to get filled up now too. I do pet portraits a lot as well. It’s always a good feeling when people like my art and come to me to do something for them! I always feel very humbled. It’s a fear of mine that my eyes may become affected by Behçet’s and that might affect my ability to paint and create art. I have had appointments at the optometrist and my eyes are in good health at the moment so all I can do is be grateful for that now.
I attend the Wales support group meetings and I think it’s very helpful to connect with others with the condition. Everyone is always friendly and there’s a sense of belonging knowing that everyone on the Zoom understands and has been through similar journeys. I wouldn’t know of another person with Behçet’s without the group and I think that makes it a less isolating condition to live with.
What advice would you give to someone who has just been diagnosed with Behçet’s?
The advice I’d give to someone just diagnosed with Behçet’s would be to go easy on yourself, you’ll probably be questioning everything, that can get tiresome and depressing. Take time out to forget about it all for a while and don’t let the condition define you.
Thank you to Becca for answering our questions!
Interview published 16/11/2022
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!