Jessica

Jessica is originally from the Wirral in Merseyside but now lives in Hertfordshire with her husband Wayne and their cat Trevor. She loves singing, travelling and raising awareness of Behçet’s and other health conditions.

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

Before I went on my honeymoon in 2014 I’d suffered with endometriosis and also been diagnosed with fibromyalgia. I noticed though that I would get joint pain and ulcers whenever I had a period.

Most of my Behçet’s symptoms started in 2014. Both my husband and I became unwell with food poisoning whilst on our honeymoon trip in Turkey. He got better and I never did. Things progressed after that. The first mouth ulcer I ever had appeared about a year later. I never thought anything of it.

The symptoms started to get a lot worse in August 2020. I started to get five mouth ulcers, then ten, then fifteen. I’d already previously been to the Behçet’s Centre of Excellence for the symptoms of skin lesions and ulcers. My rheumatologist had recommended I visit the Behçet’s Centre in London. Professor Fortune wasn’t convinced it was Behçet’s and she assumed that I had a skin condition. But I saw Dr Kidd, and he saw all the photographs I’d collected and read about all my reports about my fibromyalgia. He said, “rather than worrying about a diagnosis, we’ll treat your symptoms”. Nothing seemed to work though. The official Behçet’s diagnosis was in December 2020 after I got diagnosed with gastroparesis in August. That gave Dr Kidd a lightbulb moment as there was no other reason why I would have got gastroparesis.

I’m asked a lot if I have any connections to the Silk road or to Turkey, and I don’t know of any. I have since met at least two people who have been diagnosed with Behçet’s after going to the same region of Turkey though. Whatever form of food poisoning I had in Turkey may have set it off, along with the stress of being in a car crash two months before I got married, and the stress of planning a wedding.

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

Probably the most difficult thing is the reoccurrence of different symptoms. At first I was told my Behçet’s was very mild and with the correct medication and mouthwashes, the ulcers would be under control. My ulcers aren’t actually too bad now. But, I was warned to be prepared that Behçet’s can hit you from any angle at any time, and then it did. It has attacked my stomach to the point that I’ve got gastroparesis, which means I have a paralysed stomach. Sadly, now whatever I eat doesn’t digest.

It’s also attacked my heart. I’ve not had an official diagnosis for PoTS (postural tachycardia syndrome) but I suffer with a lot of collapses and heart palpitations. The symptoms reoccurring can be really difficult.

Secondly, the isolation. Not so much with my family and friends because I’m very lucky with my family. The Behçet’s family is also very welcoming. But often when I have had to be admitted to hospital, Dr Kidd doesn’t have a ward for Behçet’s patients, so I get placed on the stroke ward. A lot of the doctors sadly don’t know how to deal with me, so I’ve dealt with a lot of stigma, and medical professionals asking me to eat when I can’t, or asking me not to “harm myself” by forcing myself to be sick. I’ve been accused of having an eating disorder. I’ve been told it’s “all in my head(!)”. I have a dialysis catheter and they don’t give you that for no reason!

Through having Behçet’s disease I’ve gained a lot of insight and I’m a different person, but it does come with its struggles, and that’s more in a social setting where I’m discriminated against. But, I have a good network of people I can rely on.

Yes, I was given the opportunity to speak on BBC Three Counties radio and it was a very quick three-minute interview and I was able to talk about Behçet’s. I did actually get a few messages from people on social media and one lady did go on to get her diagnosis from that. That was encouraging but it also makes me sad that I’ve lead them to that diagnosis.

The whole reason behind my Health Awareness website was to raise awareness for health conditions, but it’s also promote the message that people should treat others with respect. It came about because when I was in lockdown, I was lucky to have my husband to support me, but I thought about all of the people who may feel alone. I wanted to offer them support. I wanted to help people who are feeling alone and suffering, and also to help the charities I support, like Behçet’s UK.

Yes. When I first found out about Behçet’s, I was really scared and I was afraid of what my future might hold. I happened to join a Behçet’s support group on Facebook and I found it really overwhelming. Some people can be really supportive, but some people can be very opinionated. Rather than post something about my symptoms on there, I sang a song ‘Somewhere over the rainbow’ and I posted that to give everyone suffering a little bit of happiness. Another Behçet’s warrior called Cat from Rising from the Illness messaged me and asked me if I’d like to do an online virtual festival to raise funds for Behçet’s UK. It raised over £1000 which we were really pleased about. Since then, that’s opened a door to a whole community for me and lead me to create an Instagram page, and a YouTube channel. Since then, when I’ve been in hospital, I have people to speak to and I don’t feel so isolated. I was in hospital for two months on my own in 2020, with no other Behçet’s patients. People like Cat were able to speak to me, and I had weekly visits from Dr Kidd. If anyone has met Dr Kidd, they’ll know he goes above and beyond for his patients.

Social media does come with its problems but I have to say, it’s saved me. I do have Borderline Personality Disorder, which is a very serious health condition, and if I didn’t have support through social media, I may not be here today. That’s me being as honest as I can be. I think that Behçet’s UK and social media have saved me.

We noticed as well from your Instagram you’re very into travelling. Do you find that travel is something that’s quite difficult for you to plan when you’ve got to consider all your medical requirements?

It wasn’t at first, it was easy, because with fibromyalgia, as long as I had the correct medication, and travel insurance, I was fine. I know when I need to take a break. I may have been in the most beautiful country in the world, but if I needed to spend a morning in bed, I would. But, since I’ve had the dialysis catheter, and with the pandemic, I’ve been really scared. My husband and I were lucky enough to go on a cruise with P&O back in September and it was a fully vaccinated cruise just around the UK and they were so supportive of my disabilities. They even put a sharps box in my cabin and gave me a shower chair. Sadly, though, for an up and coming holiday that we’ve booked for 2022, I have tried to arrange welfare through the flight company, and they’ve not been very understanding of what I’m going through.

There’s been a few other things with regards to travelling I’m struggling with. There seems to be a misunderstanding that just because you don’t look unwell, people assume it’s a mental condition. That’s one thing I quite often get told, “you look okay…. it’s just anxiety”. You don’t need a special seat on a plane for that. I shouldn’t have to pull down my top and show my catheter, which is part of me. It’s in my body and is stitched to my skin. You wouldn’t take off your clothing! They should take your word for it.

So, it does come with its barriers, but it’s something I’m dealing with. Just because people have health conditions and disabilities doesn’t mean they have to be stuck at home. People have the right to explore the world. I know in a pandemic, people will have their opinions, but until I get told I can’t travel or I’m advised not to, if I have support from my medical team, I will go. I love travelling, I love that I can show everyone you can have a good time.

I’m hopefully going to America soon. My husband and I met ten years ago looking after adults with disabilities in Maryland and we went back for one year. I then got a job in the NHS so I made the decision not to return. Then we were given the opportunity to go two years ago before I was diagnosed. I was well enough to fulfil my caring duties. I thought that after getting my Behçet’s diagnosis and getting my dialysis catheter that dream of going back again wasn’t going to be a reality. My old camp director contacted us and she said she was happy for me to return as long as I have the correct support in place and that I could do light duties. So, I’m going, but I will hardly be doing anything. I can’t do things like push wheelchairs anymore, but I can help with prompting people verbally. It’s nice that they’ve given me that opportunity.

You mentioned that you worked for the NHS. Would you like to tell us more about that?

When I left the camp in America I got a job for the NHS in a residential home looking after people with disabilities. I was then able to get the opportunity to work in a stroke rehabilitation unit for three years. My health got really bad and it was a mutual decision for me to be medically discharged. Sadly, since then I’ve not worked, but I’m now a university student studying design from home. The university have been great. I’m having my dialysis catheter replaced next week and the university have allowed me an extension of two weeks because I’ll be poorly afterwards, so I’m really pleased they’ve given me that option and I don’t have to panic about deadlines.

As well as travelling, do you have any particular hobbies or interests that help take your mind off your health conditions?

I’ve loved singing ever since I was the age of about 6. I don’t do enough of it. Every now and then I sing along with YouTube and annoy my neighbours!

One thing I sadly can’t do anymore is swim. Before I got the catheter fitted, I was an avid swimmer. Any condition that affects your joints, they advise you to exercise if you can. I would often do a water aerobics class with the over 60s and I loved it. I haven’t been in about three years now. I can’t wait for the day Dr Kidd says “you don’t need your catheter anymore”, I will be right in that pool! I miss it so much!

I have gained a lot of new loves since getting diagnosed though and since raising awareness online. I love design and animals. I’ve got a cat called Trevor. He’s a very odd character but he knows when I’m not well. He makes a very cheap hot water bottle! He’s so therapeutic.

Do you have any tips for others in regards to managing your Behçet’s symptoms?

Take breaks when you need to. Other people can be quite judgemental. If you need to have a sleep, and people say “but you’re not working, why do you need to sleep?”, or “why do you need to take so many breaks?” or “why are you going on holiday when you’re on benefits?”. You’re entitled to a life. Also, fatigue and tiredness are two different things. If you need to have a sleep, have a sleep.

Listen to your body. Listen to what your doctors are saying, but don’t be scared to get a second opinion. This is no disrespect to the Behçet’s Centre but I was initially sent away too quickly. I stuck to my guns, and because of that I got treatment. I was in the early stages of malnutrition. If it wasn’t for me calling the ambulance as a cry for help, I may not have been here anymore.

Be patient because it can take up to ten years for a diagnosis. Behçet’s isn’t a condition that is diagnosed via one test, it’s a process of elimination so unless you’ve got that particular gene or you’re from a Turkish background, it’s not picked up so easily. Don’t wish for something to happen just to get a diagnosis. I would quite happily have minor symptoms and for it have taken ten years to get the diagnosis, rather than what I’ve been through. My life completely flipped. I think a lot of people just want the name of what they’ve got, but you can still get treatment for individual symptoms. They can treat you whilst investigating. Try to be patient with your doctors because they are really stretched.

Thank you so much to Jessica for answering our questions!

Follow Jessica and Wayne’s travel and health awareness website at https://www.holidaywiththeheathers.com/

Watch their YouTube channel at https://www.youtube.com/channel/UCG9qsEyGKhGM7Vp-ga95hSg

Follow them on Instagram at https://www.instagram.com/holidaywiththeheathers/

Interview published 15/12/2021

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!