Melissa
Melissa has Behçet’s syndrome, a systemic vasculitis which causes oral and genital ulcers, skin lesions, fatigue, and joint pain. She found an electric wheelchair liberating, but it is an ongoing challenge to control the disease and prevent infection.
Melissa is completing a master’s degree, where she is interviewing people to understand the disabling effects of mouth ulcers. During the COVID-19 pandemic she is back living with her parents. Ethnic background: White British.
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Although prone to mouth ulcers and urine infections when growing up, this escalated when Melissa was 13. She went back and forth to the doctor with a peeling mouth, ulcers, infected lips, and flu-like symptoms. At times this was so bad that Melissa couldn’t go to school, eat, or talk. Topical treatments didn’t seem to help. Brushing her teeth could make her faint, and her mum regularly used lukewarm salt water and cotton buds at night to stop Melissa’s lips sticking together.
By 16, Melissa was developing genital ulcers and seeing an oral consultant regularly, but she still didn’t know what was wrong or have effective treatments. As a result, she was depressed and having “dangerous thoughts.” After a therapist from child and adolescent mental health services assessed the impact on her life and wrote to her GP, Melissa was referred to gastroenterology, gynaecology and rheumatology. However, she feels the way that medicine is arranged made it difficult for doctors to decide who should take responsibility.
Melissa’s mum retired early to help with her care. Her parents supported her wish to go away to university - even buying a caravan so they could stay nearby. Although secretly they didn’t expect she would cope, she loved it, made friends and had relationships, and campaigned on behalf of disabled students.
While at university, Melissa was referred to a Behçet’s Centre of Excellence through a complicated process. Following assessment by a multidisciplinary team of experts in eyes, rheumatology, oral medicine and psychology, she was given the diagnosis. For Melissa, this has been crucial in getting a systemic disease treated as such. She now receives a biologic drug which she injects every two weeks to dampen down flares.
Unfortunately, being immunosuppressed and having Behçet’s makes Melissa prone to infections. A year ago she had sepsis and a superbug and finds it scary that she may have to depend on rare antibiotics. Although she doesn’t want to be treated as a “porcelain doll,” Melissa has to be vigilant as she can deteriorate quickly. She always has a hospital bag ready, and her daily life includes scheduled naps.
Looking back, Melissa feels angry that part of her childhood was taken away, and wishes she had met with more empathy. She has developed strategies to help doctors listen to her, such as quoting research articles. She has often felt that accessing services and treatments involves “justifying doctors’ time and justifying money.” She thinks this is frustrating for staff and doesn’t take account of the emotional and monetary cost to her and her family of not being able to access them.
Melissa contrasts her desire to prove that she is able and independent with processes for accessing disability payments which focus on all the things she can’t do. Getting an electric wheelchair was “liberating”. She hopes that the increase in online contact as a result of the 2020 pandemic will in future allow her to work from home and pursue her interest in music directing.
Repeated episodes of mouth peeling and ulcers took their toll on Melissa and her family.
Repeated episodes of mouth peeling and ulcers took their toll on Melissa and her family.
I had a couple of weeks of being back to normal. I was quite unwell still given that I’d lost a fair bit of weight. I was quite thin as it was at the time and, having been through this, I was sort of emotionally and physically exhausted, particularly at the kind of age I was?
Yeah, so a couple of weeks later it started again. My mouth started peeling. This time I kind of, I knew it was happening, so it was a big rush to try and sort of do all the topical treatments and try to stop it before it, it sort of happened to its, its full extent. But some of the treatments they sort, they took away some of the pain but they didn’t stop it happening, and the second time my mouth got infected, it went very pussy, there was an awful smell, and rather than just being confined to the inside of my mouth it spread out on to my lips, and of course your lips are really, really concentrated nerve endings.
And I was, I was exhausted, so even in the pain I was managing to get some sleep, but then I would sleep and my lips would weep, and the pus would dry and my mouth would stick together with the dried pus? [Sighs] so my mum used to come and periodically through the night, with sort of a lukewarm glass of water with some salt mixed in, and with some cotton buds, and she used to use the cotton buds to sort of prise my mouth back open so I could go back to sleep. And this sort of became a regular routine, [laughs] and I would cry in pain when she was do it, doing it and she would cry because she could see me in pain and sort of it was a huge emotional toll on my whole family. Yeah, it was a really difficult time.
Before getting a vasculitis diagnosis, Melissa remembers being passed from person to person until “the buck landed with rheumatology.”
Before getting a vasculitis diagnosis, Melissa remembers being passed from person to person until “the buck landed with rheumatology.”
Yeah, and eventually found a therapist that I did like and things started improving with my mental health, and this therapist wrote a very, very strongly worded letter to my GP who had sort of been ignoring me for years, and wrote a list of all the things that I’d had to change in my life, and that I felt I couldn’t do anymore, and sort of the impact it’s having on me, and that it was not fair that I didn’t feel listened to, that sort of even if medical professionals couldn’t do anything I should’ve at least felt some sort of empathy from them, which I didn’t at the time.
Yeah, so my GP got this letter, and sort of the result from that was a long list of referrals to different consultants, so sort of gastroenterology, gynaecology, rheumatology, sort of the full list, because the other issue is that we didn’t really know what system these things belonged to?
I was starting to get my first genital ulcers at the time, so whereas before it was all sort of, “Go to your dentist, go to your dentist,” it was suddenly, “Oh, maybe this is dermatological.” Yeah, so that, that was sort of the first time that I was taken seriously, and something actually came of it in terms of my care. Obviously, the dental hospital were great but they mostly gave me topical stuff, which didn’t really help.
So, some things came and went like dermatology. They, they had some useful ideas like, spraying asthma inhalers on the sores, as sort of a steroid treatment, which is quite creative, but it was sort of, “We don’t know what this issue is, we don’t think it’s to do with us,” and sort of passed me on to the next person.
I had an endoscopy and a colonoscopy, again, didn’t show anything, sort of, it’s not a gastro issue, so I was passed on to the next person. Eventually sort of the buck landed with rheumatology, and my first experience of rheumatology was really not positive. And by this point I was regularly seeing the dental hospital and I was talking a lot to the consultant there and he told me about this illness called Behcet’s syndrome, that might suggest the sort of the link between the mouth ulcers I was getting and the genital ulcers I was getting.
When Melissa was finally diagnosed with Behçet’s (a type of vasculitis), it was “the strangest feeling.”
When Melissa was finally diagnosed with Behçet’s (a type of vasculitis), it was “the strangest feeling.”
Yeah, so I got through university, ended up I, in my first year I saw a new rheumatologist. I’d been to my GP, at the university, I’d obviously moved GP. My GP was a lot more understanding than my previous GP, and living in England I could access, the Behçet’s Centre of Excellence, so, which I’d read about online, so I, I told my GP that, that it had sort of been suggested in the past that this might be it. So, they initially said, “Oh, well that’s quite a specialist area, we’ll send you to a general rheumatologist first.”
So I went to that rheumatologist, they, they sort of agreed with me that I, I couldn’t have this thing looming over me of not really knowing what it was and that it was worth the time of the consultants in the Behçet’s Centre, to at least see me and if it wasn’t that then it would be fine, but at least I’d know it was another thing of the list of the things that it wasn’t.
Yeah, so I got seen at the end of my first year at university, and the way the Behçet’s Centre works it’s a multidisciplinary team, so I saw an ophthalmologist, I saw a rheumatologist, I saw an oral medicine consultant, and I also saw a psychologist, and they sort of took the time to go through my whole history with me over a few hours.
They all sort of got together and discussed what they thought and they came out at the end of it and said, “Yes, it’s Behçet’s,” and I don’t know if I was relieved, if I was devastated, it was just the strangest feeling to finally have an answer, an answer that meant that it was going to be a lifelong thing, but I kind of, I was resigned to that at that point anyway that I’d had to change my life so much that I couldn’t see an end out of it, it was just making my life a lot more manageable.
Melissa had symptoms as a teenager for five years before vasculitis was diagnosed and felt she wasn’t listened to. Looking back, “it’s mostly anger I feel towards that time in my life.”
Melissa had symptoms as a teenager for five years before vasculitis was diagnosed and felt she wasn’t listened to. Looking back, “it’s mostly anger I feel towards that time in my life.”
I know hindsight’s a wonderful thing, but how does that make you feel looking back on all that?
I feel like there’s some days that things have been challenging and that perhaps I’m not such, in such a good place mentally. I look back on it and I feel like sort of those days when I was young, people say that school days are meant to be the best days of your life, and I was so, so unhappy, and no-one really saw that outside of my family.
And I feel like sort of, that sort of part of my childhood was sort of taken away from me, and it’s, it’s upsetting sometimes but a lot of the time I look back on it and I’m angry. I’m angry that maybe if my GP had listened to me sooner, if the first rheumatologist had listened to me. It shouldn’t have had to get to the point that I was experiencing mental health problems because my physical health was in such a bad way, to actually get to see the consultants that I needed to see. And yeah, it’s mostly anger I feel towards that time in my life, and that’s shared throughout a lot of my family.
Melissa gets flares of vasculitis (Behçet’s) and infections. When they come together, it can mean “a hospital job.”
Melissa gets flares of vasculitis (Behçet’s) and infections. When they come together, it can mean “a hospital job.”
So, a flare is sort of an exacerbation of my Behcet’s symptoms, so that can be to varying levels. Sometimes it will just be a couple of mouth ulcers, some very sore joints and a lot of fatigue, and then, which stops me doing a lot, but I can still sort of get on with my uni work from home. I still eat relatively normally. And then a, I get a huge flare sometimes that will completely stop everything, so the entire inside surface of my mouth will ulcerate, will start going down my throat, will come out on my lips, I’ll get loads of genital ulcers, I might start getting some skin lesions. So, flares are very variable.
And then the infections usually come about, sometimes they come with flares because I’ve become run down or more directly because an ulcer has got infected. And again, very variable, sometimes it’s just a matter of having a week of antibiotics and I’m still relatively able to do things, and then other times it’s completely debilitating, and I end up in hospital.
So, they’re both very variable. I’d say the worst time is when they come together, which happened when I hadn’t had the adalimumab for a month, I got the worst mouth ulcers I’d had in a very long time. I’d taken a lot of steroids to try to control it, and a lot of topical steroid stuff in my mouth, and that led to oral thrush, which made the ulcers worse. And then on top of that one of the larger ulcers on my tongue went into a bacterial infection as well, so I sort of had this triple whammy of having a flare up, a fungal infection and a bacterial infection, and that was really tough because they gave me a huge amount of antibiotics to try to keep me out of hospital.
But it was sort of this constant fear of, “Is it going to get worse tomorrow?” and sort of the moment that it got worse I knew it was going to be a hospital job, but it, it stayed at a fairly constant level, but the amount of antibiotics I was on I just had a permanently upset tummy, and that leads to inflammation in itself.
While infections are “a threat,” Melissa decided she needs immunosuppression to “have a life.”
While infections are “a threat,” Melissa decided she needs immunosuppression to “have a life.”
So, at the point that happened, they took me off the immunosuppressants and sort of said that the Behcet’s was less of a threat than the infections at that point, and I still had a lot of the immunosuppressants in my system, they said it would take about six months for me to sort of get back to the level that I was before.
So, I went back to the Behcet’s Centre. We had a lot of in-depth discussions about what this meant for my life, and yeah, I quite quickly decided that I was not happy to be without some level of immunosuppression? I wasn’t going to go back to that place that I was as a teenager, that Behcet’s ruled my entire life, and that I have an appreciation that there was some risk involved, that, that I wouldn’t have a life if I didn’t take that risk, because I’d spend so much of the time having flares, being bed bound, not being able to speak or eat, that I just wasn’t willing to go back to that place. Because of course that in itself makes me at risk for infections, so yeah.
So, they decided to start me on biologic therapy, which was sort of a last resort treatment because it’s very expensive, but so far, I’ve done really quite well on it. I inject myself every other week, it’s sort of become part of routine, for someone that’s undergone a lot of medical procedures it’s not a big deal.
And I’ve had a couple of infections, and I’ve had one very serious infection, but aside from that I’m quite happy and sort of when I, when I commit to something now it sort of, I tell people that, “Look, I’ve got this condition, I’m prone to infections, things happen, I end up in hospital unexpectedly, it’s not an issue of my commitment to something, it’s just sort of the way I am.” And I feel like the effort I put into things otherwise makes up for it a lot?
Living with vasculitis can make Melissa feel like a porcelain doll who will crack if she overdoes it.
Living with vasculitis can make Melissa feel like a porcelain doll who will crack if she overdoes it.
You mentioned earlier about this, you don’t want people to treat you like a porcelain doll, I just thought that was such an interesting phrase. Have you felt or do you feel like a porcelain doll?
I’ve certainly felt that way in myself, particularly before I’d started the immunosuppressants and sort of the slightest thing could trigger a flare up and sort of the things that I would attribute it to, which are probably more like a build-up of things moving towards that sort of single final straw, but when it happens it feels like it’s that final straw that’s the whole thing. Things like not having a nap on a particular day when I should have and doing something like trying to go out with friends instead and then having this huge flare up and thinking, “Oh, if I just hadn’t done that maybe it wouldn’t have happened.”
But no, it makes you feel really fragile, and you feel like all these other people around you can manipulate their bodies in certain ways, if they’ve got like a, a big deadline coming up with work or study they can sort of push themselves, but sort of that, that one push too much with me and I crack, and everything goes wrong and then I can’t do anything.
And sort of, the metaphor of being a porcelain doll sort of sums it up really well, yeah. And then even more so after the infections started, knowing that I just needed to do one little thing like go swimming or, not being close enough to a toilet at a particular time and sort of think, “Oh, I’ll wait to go home to go to the toilet,” and then getting an infection, and it’s all these just silly little, little things that then have huge impact. Well yeah, I’m not sure if it is the little things, it’s probably more like a build-up of things, but it always feels like something is the final straw.
Melissa needed a wheelchair to be independent with vasculitis. She paid for it by applying to charities.
Melissa needed a wheelchair to be independent with vasculitis. She paid for it by applying to charities.
Yeah, so I knew what wheelchair I would ideally like to have. Sort of you, you don’t think wheelchairs cost a lot of money, they do [laughs], they definitely do, and sort of my initial thought and my, my parents’ thought was that I would use some of my savings, to go towards buying this wheelchair, and that my parents would top up if there was any sort of deficit.
So the particular wheelchair I wanted, and that I felt was right for my needs in terms of it was lightweight, would fold down easily to get in the back of a car, so I could still get out and about with my friends that had small cars and things like that, we contacted the company that makes them, and they came and measured me up for one, brought one along for me to try. He even just [laughs], we have a lovely video of me on our driveway the first time I sat in this chair, and it’s got a little electric motor on the back, and this lovely video of me whizzing around and I have the biggest smile on my face, and I don’t think that’s the kind of thing a lot of people associate with someone becoming a wheelchair user, they think it’s this terrible, tragic thing. But no, it was liberating.
Yeah, and we got advice and [laughs], but I’d fallen in love with this wheelchair, and it made my parents so happy to see me feel that free and feel that I was able to move around that easily and sort of, I felt on top of the world, it was brilliant.
And yeah, I was really reluctant to accept money from my parents because it was, it was a lot of money. So basically, that entire summer that I was home from university I spent writing letters to charities, and yeah, by the end of the summer, I had enough money to put in the deposit on this wheelchair, and in the October, I bought the wheelchair outright not borrowing any money from my parents but solely fundraising.
For Melissa, finding the “right time” to tell a potential partner about the seriousness of her vasculitis is “an art that I haven’t quite got the hang of yet.”
For Melissa, finding the “right time” to tell a potential partner about the seriousness of her vasculitis is “an art that I haven’t quite got the hang of yet.”
It’s difficult to find people that can see me as a person beyond sort of all of this overwhelming medical stuff, and someone who has this balance of not treating me like a porcelain doll, that everything that you could possibly do might make me ill, and someone who perhaps doesn’t realise the consequences of their actions, and what small things can have a big impact on me?
And yeah, it’s a difficult balance but in a way it’s good for assessing who is a good person, if someone sort of hears about all of that and is like, “Nope” [laughs], then fine, you’re probably not a very good person anyway, I don’t want much to do with you.
Admittedly some people have personal things going on in their lives and they quite understandably can’t take more of that emotional pressure on, but most people are quite happy to try to make an effort to.
There are things like not really knowing when to disclose things to someone? I use a wheelchair when I’m out and about generally, and when I don’t use a wheelchair, I sort of drive close to doors and then use a walking stick and sort of hobble about [laughs]. So, people can see that something’s not right. But sort of finding that right time to tell someone what it is and tell someone how serious it is, or how it affects me, or what I went through growing up, is sort of an art that I haven’t quite got the hang of yet? I’m still sort of trying things and seeing how they work out, which is fine, I’m young.
Melissa’s vasculitis causes painful genital ulcers and infections. This is not always easy to talk about.
Melissa’s vasculitis causes painful genital ulcers and infections. This is not always easy to talk about.
Certainly, when I first went to university and I had my first proper relationship, sort of the sexual side of things, managing doing that and not getting infections, not getting ulcers, I feel like it was a very much trial and error thing on my own part and that maybe I wasn’t comfortable asking about it. Maybe if someone else had started that discussion it might have been easier?
I think you said you were about 16 and you started getting genital ulcers, and I’m sort of thinking back and think, how would I have even known that that’s what I had. You know, it’s not like looking in your mouth where…
It took me a while to have a look, mainly because I think I wanted to ignore it and pretend it wasn’t happening. But the pain of going to the toilet and it just, I couldn’t deal with it anymore, when I’d go to the toilet and come out of the toilet crying and that wasn’t something I could hide from my mum. I sort of, in the end I sort of took a torch and a mirror and thought, “That’s not right” [shakes head and laughs], and I showed my mum. I’m quite close to my mum and my mum said, “No, [shakes head and laughs] definitely not right.”
Yeah, then we went to the GP and then I was subjected to all of this STI testing. Which was entirely unnecessary, and was a painful process. Things were very, very inflamed and having someone put a speculum inside me was horrendously painful and I cried and the nurse that did it said to me, “I barely touched you,” sort of, it was really dismissive and there was no empathy at all in the process.
Melissa gets repeat infections with vasculitis, including a ‘superbug’. She is afraid of becoming resistant to antibiotics as that would be “the end of the line.”
Melissa gets repeat infections with vasculitis, including a ‘superbug’. She is afraid of becoming resistant to antibiotics as that would be “the end of the line.”
Sort of two of the antibiotics that treat it were IV antibiotics but one was an oral antibiotic, admittedly quite an obscure one, so it comes in a sachet that you mix into water, and that sort of wherever I went from that point I would need to carry this list of antibiotics that would treat the infection I had, and carry this oral antibiotic as well to take straightaway as soon as I got an infection, but equally that I should avoid taking this antibiotic for as long as possible because I should go through as many antibiotics as I can first and then take it because, if I become resistant to this, then it’s kind of the end of the line.
And yeah, for someone who has sort of experienced health problems a lot before, I think I would’ve expected myself to deal a lot better with sort of that fear. But it was, it was a different kind of fear, it was not fear of, “Oh, I’m going to end up in hospital with an infection at an inconvenient time and not be able to do something,” it was a fear that was, “I’m scared I’m going to end up resistant to all of the antibiotics and that’s going to be the end”, which was something very palpable.
And I don’t think it’s something that I’ve fully come to terms with yet. It’s just over a year ago it happened. And, since then, I think I’ve always felt vulnerable in terms of my health, but I’ve, it’s never been sort of to the point that I have nightmares about it, and that sort of before I, when I wasn’t having a flare, when I didn’t have an infection, I sort of found a new normal? [Laughs]. Which is a phrase that’s being used a lot now in a very different way, that maybe, maybe this will become normal one day, but since then I’ve been quite afraid. It’s something I think about a lot.
Melissa’s referral to a specialist vasculitis centre involved “a lot of political stuff that I could have really done without.”
Melissa’s referral to a specialist vasculitis centre involved “a lot of political stuff that I could have really done without.”
The other issue that I had in terms of getting to the Behcet’s Centre was funding. So, living in Wales, if you get referred to outside of Wales, things basically have to be approved by the health board, and the first time I was referred to Behcet’s Centre there was a whole lot of confusion, that the referral came from my oral medicine consultant in [city in Wales] and my rheumatologist in [town in Wales], when the address on my GP records was an English address. And there was this whole bureaucratic faff that “Why should this patient, who is resident in England and under that health board, why should the health board in Wales pay for that very expensive appointment in this centre?”
And there were letters sent back and forth explaining that, “Yes, she’s resident at that address in England some of the time, but her home address is in Wales with her parents and we’ve done her care for years.” And in the end of it was just this whole faff that I had to go to my GP in England to get it done and then they had to send me to a rheumatologist whose referral had more weight, even though a very well respected rheumatologist and oral medicine consultant had already referred me. And it’s just a lot of political stuff that I could have really done without at that point.
When treatment for a common condition isn’t working, Melissa thinks a multidisciplinary approach is crucial to “join up the dots” of a rare disease like vasculitis.
When treatment for a common condition isn’t working, Melissa thinks a multidisciplinary approach is crucial to “join up the dots” of a rare disease like vasculitis.
So, if you had a magic wand that you could wave and tomorrow a 13-year-old girl is faced with the same thing as you were faced with, how would you, how would she experience things differently, what would make that happen?
I think her GP would recognise that even if they don’t think something is systematically wrong or seriously wrong, that they show a bit more empathy for her, and that she gets access to psychological help sooner. And in absolute ideal world if, I feel like it, in a way it’s necessary to go through sort of all those, at least some of those topical treatments to begin with because they do help a lot of people and, so things like oral ulceration aren’t straightforward and a lot of the time it is nothing serious.
But someone in that much pain and experiencing things to that severity, I think sort of this multidisciplinary approach is so crucial, and it’s only when you get that approach that people then start to join up the dots? And sort of put a whole system together and see that, “Yes, this person’s experiencing joint pain, that’s usually something to do with rheumatology, and yes, this person’s experiencing mouth ulcers and maybe they should see a dental hospital and oral medicine consultant,” when you actually put those two consultants together and they have a discussion then they can join up the dots. And rather than maybe giving you some oral anti-inflammatories for your joint pain and something topical for your mouth they can look at treatments that sort of treat this as a systematic thing. And, in my experience and in the experience of people I’ve spoken to who have autoimmune diseases, that’s what really makes a difference to quality of life.