Rachael
For the first in our new series of ‘Your Behçet’s Stories’, we caught up with our Trustee, Rachael, for a special in-depth interview about her diagnosis, how she manages her Behçet’s with work and family life and much more.
Rachael has been a Trustee for Behçet’s UK since 2013. She lives in South Wales with her husband, Dan, two children, Joseff and Anwen, and their dog Patch. Rachael was diagnosed with Behçet’s in 2004, at the age of 24, after a sudden onset of symptoms. She works part-time as a Paediatric Diabetes Specialist Nurse and runs the South Wales support group for Behçet’s patients. She is an active ambassador and continues to work with Behçet’s UK to raise awareness of Behçet’s in Wales.
When and how did you get diagnosed with Behçet’s?
I got diagnosed with Behçet’s in 2004 when I was 24 years old. It was an acute onset of symptoms, not a slow build up or years of wondering what was wrong, like others have experienced. It hit me full on and very aggressively. I’m often described as a ‘textbook’ case. I started with multiple mouth ulcers, chronic fatigue, and skin lesions. Within 6 months of these three symptoms starting I developed genital ulcerations. Like so many, I had a few trips to the sexual health clinic, but within three months of the genital ulcers developing I was referred to an immunologist with a probable Behçet’s diagnosis.
My condition snowballed and in just a few months I experienced joint inflammation, erythema nodosum, uveitis affecting both eyes, different types of skin lesions including papulopustular lesions and acneiform, and ongoing bowel issues. I had always suffered with bowel issues. As a child I would often faint from the pain of bowel cramps and had a hospital visit due to it on one occasion. The symptoms were put down to irritable bowel syndrome. I still faint to this day if my bowel symptoms flare up, which is usually around 1am in the morning! I saw a great immunologist at the Manchester Royal Infirmary, Dr Matthew Helbert, and it was very clear that all the symptoms confirmed Behçet’s. Within a year of those first three symptoms appearing I had my diagnosis.
Diagnosis is never the end with Behçet’s. It isn’t like you get your diagnosis and something to cure it and off you go, never to be seen again. Getting a diagnosis of Behçet’s is just the beginning and it’s often a very slow, painful and lonely process of trying different treatments and attending a lot of appointments, feeling so sad that your health will never be what it was. Once you find a treatment that works for you, there is so much you want to do and achieve!
How would you describe what living with Behçet’s is like to someone who isn’t familiar with the condition?
I see Behçet’s as a rollercoaster you never get off! You often don’t know what’s going to happen when you reach the top of the climb and the downhill moments can make you feel so out of control. Your world is turned upside down and you can’t see what’s around the corner; it can be a shock when something unexpected happens. It never stops, but sometimes the ‘resting time’ before the next loop-the-loop is longer than the last, allowing you to breathe, recover and attempt to prepare!
Living with Behçet’s day in day out can be exhausting. I assess my symptoms every day. Am I okay today? Do I need to ring for advice? Are these symptoms manageable? Is my medication working okay? I have to be organised and ensure I never run out of my prescriptions, that I know when my main biologic is due, that I rest when I can, exercise when I feel well enough to, and manage part-time working along with two energetic children so I don’t exhaust myself too much.
What have you found most difficult about having Behçet’s?
Behçet’s can be so unpredictable, you have no idea when the symptoms will flare up, if they’ll be manageable, or if you’ll need medical attention or steroid intervention. I find it really hard when it incapacitates me to the point of being unable to look after my family or go to work. It can take weeks, or even months, to recover from a flare up, not just physically but psychologically as well. It takes so much mental strength to overcome another flare up. It’s difficult not knowing if the treatment you are on will keep working; the uncertainty can be hard.
How do you manage your symptoms day-to-day?
The first thing I do when I wake up is a Behçet’s check up! I ask myself how tired I feel and what symptoms I have. I consider how to adjust my day, what I should wear if my skin is sore and I have skin lesions, what I can eat if the mouth ulcers are at their peak in pain, and I add little things (mainly cake!) to take care of myself. It doesn’t always work and the simplicity of a phone conversation can leave me drained, and I may put a film on for my children while I snooze on the sofa if I’m struggling. Most importantly I never miss my medication. I take my daily, weekly and fortnightly medications so that I know I’m giving my body the fuel it needs to function as best it can
Do you have any tips for managing symptoms and/or flares?
If the flare is really bad, then I contact my rheumatology specialist nurses for advice. For pain relief I visit my GP as they are very good at recognising the need to manage my pain well. If the flare is bad, then I have to take time off work and I’m slowly learning to not feel guilty about that decision. I’ve learnt the hard way that trying to keep going when I’m not well only makes the flare up more aggressive. I can be too stubborn and taking care of myself is something I still have to work on.
Day to day, I use the tools I have, whether that be taking my medication, resting on my days off and not feeling guilty about not doing any of the jobs I was meant to, eating well, and exercising if the symptoms allow, as exercising really helps my mental health and ability to cope.
How do you manage looking after a family and working part-time?
It can be really hard! It’s a juggle for sure! Looking after a family and working is difficult enough, but add Behçet’s to the party and it becomes even more difficult. My children are only young but they know that Mummy has an illness and needs medication, which lives in the fridge and in my special tablet bag, to try and keep me well. There are days when I really struggle to look after them as I’m so exhausted, so it’s about teaching them compassion and kindness, as well as learning that it’s ok to watch films all day!
The last few years have been especially hard with really debilitating flare ups so I have had a lot of sickness in work. I work in a great team, who are extremely understanding, but you do feel guilty as you know that they are shouldering your work. I work hard – I’m conscientious and creative and enjoy the many challenges it brings. It can be stressful so I need to manage that by making sure I don’t let it creep into my evenings or days off. Work is where I get to be someone else for the day and I don’t take it for granted, as I know there may come a time when I might be unable to work. Being honest with your employers is crucial. I’m much better at saying if symptoms are worrying me or if a flare up is getting worse. It means that they aren’t shocked if I ring in sick. It’s not always possible to prepare for an episode of sickness, as the flare up can come out of the blue, especially my gastro symptoms, but being honest from the outset has meant I’m never judged or questioned if I become suddenly unwell.
How did you get involved with Behçet’s UK?
The previous Chair, Alan Booth, wanted Trustee representation on the board from all nations in the UK. There wasn’t currently any representation in Wales and, I was approached to see if I’d be interested. I’d written for the newsletter on a few occasions before then and had been an active fundraiser, but being a Trustee wasn’t something I had considered. Most crucially, around the time I joined as a Trustee, the Centres of Excellence had opened in England and it was a shock to realise that the devolved Welsh Assembly Government had opted out of a Centre. It was thought there were enough experienced specialists and resources in Wales. Whilst I don’t deny that there are some excellent specialists here, having a co-ordinated, seamless and multi-disciplinary team is lacking. Specialists we need may be in different hospitals within our health board and sometimes the specialist we require is in a completely different health board, resulting in a funding query. There are also some patients who receive specialist care in England. Communication can be compromised, treatment decisions delayed, and frustrations then develop.
Since becoming a Trustee I have attempted to raise the profile of Behçet’s and the lack of a multi-disciplinary approach. I also support patients and their families, and run a support group across South Wales. I’ve had the opportunity to hold a Behçet’s in a Day in Cardiff with the specialists from the Centres giving up their time to attend and present. I also deliver an awareness raising presentation to third year medical students every year and have been invited to present at various Genetic Alliance UK and Rare Disease UK events.
What do you like best about being a Trustee?
I enjoy being a part of a Charity that strives for equality and better outcomes for all patients, and that helps people living with Behçet’s do so more positively and comfortably. Being a Trustee gives me the opportunity to vote for research, supporting new treatments or approaches, and to improve the care for our younger patients. It also provides the opportunity to be involved in events, whether that be the Family Fun Days or Conferences, as a way of providing support to other families. Making good decisions to improve outcomes to benefit all our members is my driving force as a Trustee.
Thank you so much to Rachael for answering our questions!
Interview published 25/11/2020
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!