Megan
Next in our ongoing series of ‘Your Behçet’s Stories’, we chatted with Megan who shared with us her difficult experiences of the side-effects from taking steroids for her Behçet’s, her challenges juggling her job with family life, and much more. Many thanks to Megan for sharing her story.
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.
Megan is from Scotland originally but now lives in Rochdale with her husband, their two children, and her husband’s parents. She was diagnosed with Behçet’s in her early 20s.
When did your symptoms first start and how did you get diagnosed?
My symptoms first started 6-7 months after I had my daughter. I had started a new part-time job when I became very unwell. I had really bad constipation to the point that I had to go to hospital. That’s not a typical sign of Behçet’s, but I guess that was me starting to get very unwell. I also had fatigue and genital ulcers. When I went to the doctor I was told that it was genital herpes and they were going to do a biopsy. My world crashed around me because I was married and I thought, oh my gosh, my husband’s going to think that I’ve been cheating on him. I didn’t tell my husband that they’d said that to me and I didn’t tell anyone.
I was so unwell, I was staying with my mum at the time, and I could hardly get out of bed. I was pretending to everyone that I was okay, because I didn’t want to go to the doctors in case anyone found out what I had. I remember my mum actually said “that’s it, we’re taking you to the hospital because I’m getting really worried about you”. When we got there I remember them saying they got the biopsy back and I didn’t have herpes, but they had to keep me in hospital to do further tests. At that point, I thought, why did I let myself get so unwell because I was worried about that, but it shows the stigma of having an STI.
I was in hospital for about two weeks and they were toying with the idea that it might be sarcoidosis or Behçet’s, but I had the flare of all flares where I had all the classic Behçet’s symptoms in one go, so in a way, I was kind of lucky I had that big flare because I know for a lot of people it can take a long time to get a diagnosis, when they have symptoms here and there.
You mentioned to us that you have struggled with the side-effects of being on steroids – would you like to share more about that?
I was only 21 when I was put on steroids. I felt better on them and I thought, “oh I’m all better now”. I don’t think I quite realised that was the start of my journey, of having all the side-effects from the steroids, which made me so depressed, and then it was so hard to get me off the steroids.
Steroids have changed my body shape, to the point that I notice I’ve got a bit of fat on the back of my neck. It’s harder for me to lose weight now and I know that might seem superficial, but for me it’s one of the hardest things I’ve had to accept. When medications change your appearance it can make you feel really self-conscious. My confidence has really been affected because before I was always so confident, outgoing and bubbly. Since having my Behçet’s I’ve developed more insecurities about the way I look.
I was on high-dose steroids for nearly 2 years. Every time I tried to taper off them, my Behçet’s would flare up again. They tried me on Methotrexate but that didn’t seem to work for me. I think rheumatologists like you to try so many doses before they try you on a different medication. I especially struggled at that point with the genital ulcers. They would affect me to the point where I couldn’t wear any underwear and I struggled to walk because they were so bad.
I was getting so fed up, I went over to Turkey to see a private doctor, as my husband is from Turkey. The doctor there told me to get off the steroids because I was so young, and I’d been on them for so long, he said it could be dangerous and cause me health issues in the future, so he just took me off them. I know that you’re meant to have them tapered down so that wasn’t very nice coming off them in one go. He did put me on azathioprine but I got taken off the steroids so quickly that my body reacted badly, so I had to fly back to the UK and go into hospital. I was in such a bad flare that I felt like I was going to die and I couldn’t stand up. I felt like I was burning from the inside out. The doctor hadn’t been right in telling me to stop the steroids, but the fact that I got the azathioprine was good. The doctors in the UK were happy for me to continue the azathioprine.
I managed to taper off the steroids. I don’t know if I ever will fully have a life without steroids because when I’m in my worst flares, it’s usually steroids that get me out of them. But I’m just glad I don’t have to be on them long-term at the moment.
You mentioned to us that you have had a particularly bad year with your health – would you like to tell us more about that?
I moved to Rochdale from Scotland about 18 months ago. Adapting to the English healthcare system has been difficult and I was in limbo for a long time. I had such a good rheumatologist in Glasgow. She was fabulous. I felt like I had to start afresh when I moved because they couldn’t find my old documents.
I hadn’t been feeling too bad with my Behçet’s but then I had Covid, followed by appendicitis. What was supposed to be simple surgery to have my appendix removed turned into quite a difficult one because I know now that what happened was my Behçet’s had attacked my bowel. For about a year, I’d had abdominal pain, but it would come and go. I thought it was just the Behçet’s so I didn’t think much of it. It turned out my appendix had calcified with the constant inflammation. It had turned into a rock and fused itself on to the bowel. I had to have open surgery done.
They saw a lot of scarring on my bowel, so there was now the question of was it actually Crohn’s disease or was it Behçet’s? I had to see a gastroenterologist and I had various tests. It took about 12 months for them to decide. It turned out it was Behcet’s but because I’d been seeing a gastro doctor, he didn’t have the authority to prescribe a biologic for me. So I had to go into hospital as an in-patient to have my first round of infliximab. That year was really hard as I was going back and forth to hospital, and they were telling me there was nothing they could do and that all they could do was give me steroids. I knew I needed the infliximab and they couldn’t give me that.
I’ve been on infliximab now for 5 or 6 months and it seems to be helping me. I do still have chronic pain from my bowel surgery which is probably not going to go away overnight. I’ve got a stricture as well that can cause some issues. So if that doesn’t resolve with the infliximab I might have to have another bowel surgery. I’m hoping I don’t have to.
Even though I’ve had Behçet’s for 9 years I don’t think it’s ever affected me as much as it has during the last 12-18 months.
Do you attend one of the Behçet’s centres here in England for your treatment?
I had a first appointment there. When I was in Scotland I did express that I wanted to go to the Behçet’s centre but because I didn’t drive it would have been difficult to get there. I actually got referred to a Behçet’s centre here before I got a rheumatologist in England. It was quite good because they got a gastro doctor to come as well for my first appointment and they checked everything. They checked my eyes which is something I’d not had done before. I’ve not had problems with them but I appreciated them checking them.
You feel more heard there. I get bored of explaining to everyone what Behçet’s is because lot of doctors and nurses don’t know. I just say I’ve got inflammatory bowel disease to people but my actual diagnosis is ileoccal Behçet’s.
What other things have you found to be difficult about having Behçet’s?
I’m always worried I will lose my job. I have had more sickness than many other employees so it’s a worry for me. For me, that would be the end of my world. Of course there’s nothing wrong with being on benefits but I just feel at my age I don’t want to give up yet and I love my job. I don’t want my health to take it away from me.
I find It hard when I have my infusion and the next day I’ve got to go to work. It is difficult. Last time I had a bad reaction to it and I had to go to hospital and phone in sick the next day and when I was next in at work I was so apologetic to my manager. She said it was OK.
I hate when people ask ‘how are you?’ because you don’t want to tell them you’re not well again.
The hardest thing to come to terms with is that you’re probably never going to be fully better, and you could have symptoms anywhere.
As well as my bowel symptoms, I struggle with fatigue. People don’t understand what fatigue is. I could sleep for twelve hours and still wake up feeling the same. I never feel refreshed. I struggle every morning to get up. When I come home from work I crash on the couch. I feel like I don’t have enough energy for everything. I’ve got to make a choice because I can’t do everything. So maybe I might give extra effort at work one day, and another day more energy to the kids.
You mentioned to us that you work part-time. Would you like to tell us what you do, and do you find it difficult to manage your work with having Behçet’s?
I work 30 hours a week as an activities coordinator in a care home. I absolutely love it. I used to be a carer but I had to stop it because it was too physical for me. My job now is quite flexible – if I’m having a bad day I can do activities where I can sit down more. If I’m having a good day, I can be like “come on, let’s get up and dance!”. It can be stressful because there’s a lot to do but I find the job manageable.
My mother and father-in-law live with me and if I didn’t have my mother-in-law helping me with housework, I couldn’t work that much. I try to do some things but often I’m too exhausted on my days off.
I find mornings very difficult so I start work later than some people. So I start at 9am rather than 7 or 8.
One thing I’ve noticed since being on infliximab is that picking up colds and infections has been a bit of an issue for me, but no matter what job I have, I’d be putting myself at a risk for picking up things.
My manager’s been understanding at changing my rota at times when I’ve been sick or needed time off for appointments.
I know I’m good at my job but in the first six months of it I had the worst sickness I’ve ever had in my life. Trying to make a good impression at work while you feel deathly ill is very difficult. If I hadn’t had my mother-in-law helping me doing school runs and cooking, I would not be able to work.
At weekends I get more quality time with the kids instead of having to do cleaning. But, I do struggle with that and having to let other people help me. Sometimes I realise it’s been a week and a half and I’ve not washed my hair yet. It upsets me that sometimes I’ve got to ask my husband to help me wash my hair. I find it really hard. There’s times I just lie in bed and I won’t even get something to eat and he brings me something, and he helps me to the loo. It’s horrible having to depend on someone else. Accepting that help is very difficult.
Sometimes I feel like I should be able to do more. You’re constantly in a battle with yourself, balancing giving your body rest, but it affecting your self-esteem.
What do you find helpful in terms of self-care and managing your welbeing? Are there things that you enjoy that help take your mind off your condition?
I’m pretty boring, I go to work and spend time with my kids. I love my food and going out for meals. Now I’m on infliximab I’m able to do that again. I still have pain, but I can go out and enjoy a nice meal with my family. I love watching Netflix and TV.
I love going out. I went to see S Club 7 with my friend last year and had such a lovely time. I can’t do it all the time, but now and again I like being a bit social.
I like going on holiday a lot too. We go to Turkey a lot and stay with my husband’s family.
Do you have any advice for other mothers with Behçet’s?
For me my first pregnancy was Behçet’s-free, and the choice to have another child was difficult. I would have rather had another child when my daughter was about 2 or 3, but I had to get my Behçet’s into a place of remission so my body could cope with the pregnancy. There were a lot of things to think about. My rheumatologist wanted me on biologics before I had my son, but I wanted to have my child first. I know how my body reacts to medications and I didn’t want to be setback by a bad flare. So I ended up with a bigger age gap than I wanted. I did have to take blood thinners for a long time and my stomach was black and blue. I was quite a high risk pregnancy. I was induced and because I’m quite petite, they were concerned how fast he was growing.
I don’t think being high risk in pregnancy tainted my pregnancy in any way. I would say to anyone who is thinking of having a child not to worry too much because as long as you’ve got a good rheumatologist behind you, they won’t put you and your baby at risk. It’s not nice being on blood thinners but it’s better than having a blood clot.
I went into remission during pregnancy and didn’t really have symptoms. I was worried about having a bad flare after having my son because having my daughter had initially brought on my Behçet’s, but I didn’t really. The azathioprine managed to keep my symptoms at bay. I did want to breastfeed my son but the nurse said I couldn’t because of my medication because it wasn’t safe. I do feel that took away a bit of my bonding experience, but at least I got to have him and I’m thankful to the doctors that helped me.
My daughter’s ten now and she has started to notice more when I’m not well and I’ve noticed she gets worried about me. It’s important to sit down with them and explain that mummy’s not well sometimes, but she’ll get better. Be open and honest about your condition with your kids. Don’t protect them so much by being secretive because you will make them worry.
In a way, I think having Behçet’s has made me a stronger person and made me a stronger advocate for my children, whereas I was always very people-pleaser before. When your life is in someone else’s hands you have to advocate for yourself.
I wish I didn’t have Behçet’s, but I’ve got to make the best of it.
Interview published 27/03/2024
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!