Ross
Next in our interview series ‘Your Behçet’s Stories’ we heard from Ross who shared his experiences of being diagnosed very young with Behçet’s at the age of 13, how it affected him growing up, and more. Thank you to Ross 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.
Ross lives in Elgin, north east Scotland with his mum. He is 21 years-old and works full-time in an office.
When did you first experience symptoms of Behçet’s and how did your diagnosis come about?
I was ill from when I was a baby and had to go on many trips to doctors and hospitals for various tests. I experienced mouth ulcers constantly and even ended up in hospital on occasions due to dehydration as the mouth ulcers were so bad I couldn’t eat or drink. I was diagnosed with Behçet’s when I was 13. I also have asthma, eczema, and allergies. The eczema flare ups can be pretty bad.
It’s quite unusual to receive a Behçet’s diagnosis at the age of 13. What did it feel like to receive the diagnosis at such a young age?
I was bored of the hospital visits with no one knowing what was wrong with me. I used to hate the hospital, the doctor visits, the constant blood tests, the cameras, the scans and the smell of the hospital. When I was younger I used to faint when they did blood tests on me.
I remember the day they told me the diagnosis, I really hadn’t expected to get one. I was with my mum and dad and none of us had heard of Behçet’s. My life probably changed that day because they could help treat me.
I missed school on a number of occasions due to the stomach cramps and the aching bones.
For me I’ve never known any other way to feel, and my family and friends are always commenting on how I never complain, even when I’m feeling awful.
Do you still experience a lot of flare-ups of your symptoms?
I still suffer from frequent mouth ulcers but they aren’t as bad as they used to be before I started the medication. Sometimes I get quite tired and the mouth ulcers can be really horrible especially when trying to eat or drink. I still suffer with headaches, and get really bad eczema, stomach aches and bone pains. I genuinely don’t think I have a day when I feel 100% but then I don’t know what feeling 100% is like. Some days I’m just so tired and I have trouble sleeping, but I rest when I can. I have learnt to adjust, and some days I feel so much better than others. It’s just the way it is. But I’m glad I am better than I was when I was younger.
Do you find it difficult to manage your work alongside having a chronic condition like Behçet’s?
I haven’t had too much time off work and I enjoy my job. It’s an office so it’s not too physical. I’ve probably had more time off with allergic reactions than anything. I was quite ill after all my Covid jabs though.
What has your experience been of getting treatment for your Behçet’s in Scotland?
There is nowhere dedicated to Behçet’s around me but I see a rheumatologist, a dermatologist, an asthma nurse and my own GP if required. I used to attend the children’s hospital in Aberdeen when I was under 18. There isn’t much information about Behçet’s in Scotland though and the doctor who diagnosed me was actually Dutch and working in Aberdeen. She had come across Behçet’s before.
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 unpredictable. It’s all I’ve ever known really. I can’t remember a time when I didn’t have an ulcer or stomach ache or bone ache but it’s who I am and I manage it.
When I was young I couldn’t even ride a bike because I didn’t have the strength in my legs, they used to ache too much, and I still can’t. I used to just think it was my allergies and eczema that was wrong with me, so when they added Behçet’s to the list, I just went with it. I try not to complain and rest when I can.
What has helped you most in terms of support?
I was lucky when I was younger my older sister was very protective. I have a good family around me, my mum and dad although are separated are good friends. My mum’s family all live close by and are always on hand to give me lifts to my classes or doctors’ appointments. My mum can be overprotective of me and she took part in the Behçet’s to the Beach fundraiser in 2021 to raise awareness. I have fundraised in the past for Allergy UK.
Do you have any hobbies or interests you’d like to tell us about?
I now do Tai Chi, Kung Fu and Qigong now which really help me with my mind and my strength.
I also love reading, I read on the bus to work every day as its a 30-minute journey.
I have a Playstation 5 so I like playing games in my free time. I try to catch up with my friends too. My friends don’t see me as Ross with Behçet’s, I’m just Ross.
Do you have any advice to offer to children/young people who are diagnosed with Behçet’s?
My advice would be to have a positive attitude. Try to enjoy all the good days as best you can and keep smiling.
Thank you Ross for answering our questions!
Interview published 12/01/23
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!