Holly
Since Holly suddenly developed granulomatosis with polyangiitis (GPA) - an AAV - aged 19, her health has deteriorated due to flares, medication side effects and additional illnesses. The struggle to access disability benefits has made it harder to cope.
Holly previously lived with friends and her ex-partner and is now back with her mother, who is also her carer. She is not well enough to work or go to university. Ethnic background: White British.
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Holly was 19 years old and starting second year at university when her “world sort of got turned upside down” by the appearance of vasculitis. Five years along the bumpy road, she says her experience of chronic illness is not the kind of happy outcome people might want to read about, but she is a “tough cookie” who has learned to get enjoyment out of everyday things like watching squirrels in the garden and playing with her recently adopted cat.
Vasculitis first showed through strange symptoms, including aching bones and difficulty walking. Holly was seen quickly and treated for a suspected virus, then pneumonia, but staff were “perplexed.” As she was unable to look after herself, her mother arrived to take her home. Within days she was admitted to hospital where she had a severe anaphylactic shock to antibiotics. In intensive care, she was given high dose steroids to counteract this reaction and her body’s positive response alerted doctors to vasculitis as the underlying problem.
Although Holly was diagnosed within four weeks of symptoms starting, her doctor told her that she could have died if it had been even a week later. GPA (granulomatosis with polyangiitis) – a type of ANCA associated vasculitis - had affected her kidneys, lungs, joints, and ear nose and throat, and she was started immediately on chemotherapy (cyclophosphamide) and high dose steroids. The GPA diagnosis was definitive, but Holly says it is now complicated for her - and for her doctors - to know when a symptom is the vasculitis grumbling, a medication side effect, a new illness, or “because you slept funny that night and your arm kind of hurts.”
Over the past two years Holly has become increasingly unwell and is being investigated for two other illnesses. While on a good day she might manage a little cooking, or to wash her hair by herself, on a bad day she needs help to go to the bathroom. In spite of corroboration from doctors, it took a year and a half to navigate the “horrible” disability benefits system, and Holly describes going into debt meantime.
Holly is not able to walk far or for long, and any activity – physical or social – can take a long time to recover from. She found getting a wheelchair life changing, as she can more easily sit in the garden and go to hospital appointments. She has welcomed the increase in video and telephone appointments and hopes they continue beyond the COVID-19 pandemic as it means she doesn’t have to waste energy on travel and waiting, or risk infection.
Holly appreciates having a main consultant who listens to her and says when they don’t know something. She also really values her online vasculitis support group for the social contact and the opportunity to share experiences that let you be “a better patient to your doctors.” She is most grateful to her mother and grandmother who put in so much work and keep her going.
Holly says autoimmune diseases and treatments are complicated. Even specialists don’t always have answers.
Holly says autoimmune diseases and treatments are complicated. Even specialists don’t always have answers.
You know it’s a bumpy road, lots of things can go wrong along the way and sometimes doctors aren’t sure, it’s incredibly complicated as well, you know, it’s autoimmune diseases particularly are incredibly complicated things and then when you gain other things wrong with you, it becomes even more complicated to then figure out what, what’s what, what things are causing what symptoms, throw in a bunch of medication that has some really strange side effects as well, and it becomes very difficult to understand what’s going on sometimes and the doctors as well, you know, they don’t know everything, I mean they can’t know everything, it’s impossible to do so and there are times when, you know, especially in the last year and a half I’ve become much more unwell in the last year and a half and there’s been times where I’ve been to an appointment with my consultant and she’s literally said to me, “I don’t actually know,” you know, she said, “I don’t know what’s wrong here, I,” seemingly everything’s fine in terms of blood work and things like that but that sometimes is limited as to what it can tell you and it’s difficult hearing that going to an appointment with someone who’s, especially someone who’s a very good doctor, who’s a specialist in some very complicated things and then saying to you, “Actually I don’t know, I don’t know what’s wrong, I don’t really know what to do here” yeah they can refer me to other people but sometimes it’s not that easy, you know, it’s not, it’s not that easy to just sort of give an answer as to what’s wrong with you.
Holly’s early vasculitis symptoms were so “obviously very strange” that she knew she had to see a doctor.
Holly’s early vasculitis symptoms were so “obviously very strange” that she knew she had to see a doctor.
So, I was first diagnosed with vasculitis in November of 2015 when I was 19 years old. I was in my start of my second year of university I was in a History of Art degree, and I went from being unwell with first my initial symptoms to then actually being diagnosed within about four weeks’ time. So, it was quite a short length of time that I was actually unwell to then finally being diagnosed.
I kind of initially when I was first unwell it was very strange, I basically started off with having pains in my arms and I tend to describe the pain as being it sort of felt like, like my bones were aching and this slowly moved from my arms into my hips and my legs and my feet and it sort of progressively got more and more painful to walk, and when I was sitting down in lectures, for example, I would get up after an hour of sitting down and I could, I could barely walk and it was a struggle to walk to and from lectures, I was visibly walking with a limp, and it was obviously very strange at the time, I was like, “This is, this is strange, I’m 19 years old, what’s going on here? This shouldn’t be happening.”
So, I think the first thing that I did was I went to a walk-in centre at the hospital because it was a Friday afternoon where it was, it was becoming to the point where it was incredibly painful and obviously the GPs aren’t open on a Friday afternoon, you can’t get an appointment Friday afternoon, so I thought, “This can’t really wait until after the weekend.”
When Holly realised vasculitis treatment included chemotherapy, “my world sort of got turned upside down.”
When Holly realised vasculitis treatment included chemotherapy, “my world sort of got turned upside down.”
And that’s when they then moved me to another hospital for into the renal unit because obviously my kidneys were affected by it, my lungs were affected by it and generally I think they put you on the renal unit, all vasculitis patients go on the renal unit. So, they put me in my own room on the renal unit and that’s when I started treatment for the vasculitis, which initial treatment was chemotherapy, so it was three rounds of cyclophosphamide that I had the first one I had when I was in hospital as an inpatient and also immediately a really high dose of steroids for a significant amount of time, I think it was initially 60mg of steroids that they started me on.
And yeah, so that all happened when I was in hospital as an inpatient and then when I left hospital, I was in there as an inpatient for I believe about a week in the renal unit and then when I left hospital they then continued the treatment with the cyclophosphamide and I think my final round was early January time, so my first one was November, my last one was about early January, late December. I think it, yeah, I think it was actually early January because my birthday was kind of at the end of December and we, we postponed it like a week or so, so that I didn’t have to have it done when it was my birthday. So, I finished the cyclophosphamide and then we get started onto usually like a background immunosuppressant, so I started treatment on a drug called azathioprine which I’ve now been on since I started it, not really any problems with it been on that for four years or so now. And then they start the weaning down of the steroids over time and that’s where I’m up to now is: had it for four and a half years, still continuing to try and reduce the steroids that’s it really I guess. yeah. I’m not sure what else to say [laughs].
It’s such a lot for anybody, never mind somebody who’s 19.
Yeah. Yeah it was a, it was kind of, yeah, I guess it was, it was a lot for at 19 to be like, “Oh you’re having chemotherapy,” it’s like, “that’s strange,” also find out all this world of like, you know, “oh, we’ll treat you with chemotherapy,” it’s like, I thought, I thought that was a drug that they use for cancer, you know? It’s not something that you realise that they use for other really serious things. You know, it was kind of my world sort of got turned upside down.
Holly has had to learn the “quirks” of her vasculitis to know when to seek help and when to wait and see.
Holly has had to learn the “quirks” of her vasculitis to know when to seek help and when to wait and see.
It is difficult day to day to get a grasp on what sort of, what your symptoms are in terms of what they actually are, you know, is it the vasculitis? Is it the medication that you’re on for it? Is it this other thing that you have wrong with you? Is it, or is it just because you slept funny that night and your arm kind of hurts? You know?
It’s one of those things like well we’re not quite sure and it is difficult, you know, sometimes a lot of the symptoms that you get, it is sort of a wait and see situation in that you know, you’ve got to kind of sit with it for a bit and go, “Ooh I’ve got a bit of a cough, is it, have I just got, have I just picked up a bug?” and then you’ve got to wait and see, you know, you wait a few days and see if it gets worse and that’s difficult as well when you have an autoimmune disease, especially when you’re on steroids and immunosuppressant therapy, because sometimes you can’t wait and see, you know, sepsis for example is a really big thing with when you’re on steroids, is a thing that they’re always telling you to look out for is, you know, getting an infection and then leaving it untreated for a few days when you’ve got an autoimmune disease can turn to sepsis real quick, and obviously, you know, that’s something you don’t want to play around with, but it does make it difficult in that, you know, you don’t want to burden the doctor every two weeks with this new ailment which sometimes disappears after a few days, but then sometimes it doesn’t disappear and you know, it is difficult to determine whether something is something you actually need to seek further medical help for or not.
And I think that’s one of the things that you learn when you get diagnosed with something like vasculitis is learning how to self-care and self-manage your own disease because you can’t be contacting, well I mean you could be contacting the doctors every, every week or two weeks, but it’s just not realistic, you know, and so you kind of have to learn the “quirks,” as it were, of the vasculitis and the quirks of the medication that you’re on and things like that, and sort of assessing yourself, obviously if it’s a very, if you’re very unwell then you should seek further medical help, but there are some situations in which it’s sort of like, “hmm, do I need to go to the GPs for this?” because it’s, it’s learning how to do that and learning whether it’s actually just the vasculitis, if it’ll go away in a few days and it’s all fine and I think that that only comes with time really, is having the disease for a while I know so much more now four and a half years down the line than I did obviously when I was first diagnosed in the first year, in the first two years, in the first three years, and I know when to, I know when to bother the GP with something or not or whether it can wait for the consultation that I’ve got in two months’ time or something like that.
Steroids have done “weird” things to Holly’s head and body hair and teeth.
Steroids have done “weird” things to Holly’s head and body hair and teeth.
There’s a lot of side effects of the prednisolone which pretty much everyone with vasculitis is on, because it’s the treatment, it’s kind of the only treatment really. The steroids do some really weird things, one thing that I don’t think is even listed as a side effect, but I’m not joking, quite literally every single person in the support group has said this has happened to them, is it makes your hair go really curly [laughs] which is strange [laughs] so I now have incredibly curly hair, whereas I used to have quite straight hair and everyone else in the support group, when people have been posting me and they’re like, “Has your hair gone curly since being on the prednisolone?” and it’s had like literally hundreds of comments being like, “Yeah, same thing.”
There’re other side effects that which are really strange, like, which are not pleasant, like teeth my teeth have become much worse since I’ve been on the medication for it, I think it does something to your gums, like makes them loose, it makes the teeth loose in your gums or something. Hair loss, I’ve got hair loss as a result of the medication that I’ve been on, as well as hair growth. I’ve got hair loss here [points to head] but hair growth on my arms and things like that, very strange.
Holly explains that medication for vasculitis means “racking up a lot of other medications.”
Holly explains that medication for vasculitis means “racking up a lot of other medications.”
You’ve had prednisolone and azathioprine, but then you’ve mentioned that there are other pills that you have to manage as well.
Yeah. So, like, I mean there’s just simple, simple things that you have to go on as a result of being on other medication, and that’s where you tend up, tend to end up racking up a lot of other medications. So, like I’m on like a stomach medication because being on that much prednisolone you kind of have to be on that. I’m on a, I think it’s a vitamin D and something else, it’s called Adcal, but it’s to protect your bones because the prednisolone causes osteoporosis, so I have to have that as well. I take iron tablets every single day because I’m very prone to anaemia, which is probably affected by the prednisolone and also just general being unwell, you tend to be more prone to getting things like becoming anaemic.
And then just, oh yeah, and then also I’m on a medication for my heart, which is the PoTS side of things, and then there’s like other medications as well, like simple things which you don’t technically have to take, but things like, you know, like a B12 spray to make sure I don’t, simple vitamin things which like as a person, maybe if you’re able to have a really good diet and lifestyle and exercise, wouldn’t be much of a problem, but it’s, you know I’m not able to do, able to get outside much and do exercise and things like that, and so you know I’m going to be deficient on certain things which maybe I wouldn’t be deficient on if I wasn’t on all the medication that I’m on and things like that. So, it’s one of those things, you know, you start one medication for one thing and then you end up racking up all these other medications which if you weren’t on maybe one of those medications, you wouldn’t need the other five or so things that you’re on but unfortunately because I’m on one thing it’s like, you know, I’m on the prednisolone so now I’ve got to take this stomach acid one and also take, basically have Gaviscon every single meal as a result, things like that, it’s like yeah. Yeah.
Housing and disability benefits gave Holly a “very, very tight budget,” even for essentials.
Housing and disability benefits gave Holly a “very, very tight budget,” even for essentials.
And then the actual amount of money that you get is sort of not a lot. It’s really not a lot to live on, it’s sort of, I mean housing benefit, for example, I don’t have to access housing benefit now because I live with my mother of course, but when I did access housing benefit it’s capped at a certain level which they say they do the capped rates on what the local rent prices are, which is not in my opinion, is not the case. I think the amount that it was capped while I was short £80 every month, or something like that, from the actual rent, it’s like well how am I supposed to make up that extra £80 when my only other income is then disability benefits, well I’m then eating into the disability benefits that I’m getting, so then how do I pay for food? How do I pay for bills? How do I pay for all these things?
If you had to pay for your rent and your food and your bills, out of just the money that they gave you on housing benefit and disability benefits, you would be left with basically nothing at all every week or every month, to spend on yourself. Which just because you can’t work shouldn’t mean that every month you can’t buy yourself, I don’t know, say a new book to read, just something really simple, something that’s not even that expensive, you know, but when, when you’re running low on money in that way, and you physically cannot work, there’s nothing else you can do to earn money and the only income that you get is from the government, it’s very, very difficult to sort of sit there and not be able to buy anything for yourself, other than very basic food, we’re talking, you know, I had a very, very tight budget on food, I spent, when I was living with my partner, £25 a week on food for two people.
Which is a really, it’s a tight budget, it’s, you know, it’s about £12 each a week on food which is not a lot of money, so you know, and my treat when I was low on money would be buying myself something nice to eat, which is for a lot of people, that’s not really a treat. That’s not really buying something for yourself, you know buying a nice tub of ice cream, you know, a fancy tub of ice cream, that’s all, when that’s all you can afford and for what, because you became unwell. It’s, yeah, it’s been very difficult the financial side of things.
Holly was at university when she got vasculitis. She has since tried returning to work and education.
Holly was at university when she got vasculitis. She has since tried returning to work and education.
But I’ve just, I’ve attempted to work since I’ve been diagnosed, I attempted to go back to university, couldn’t do it, I was just too unwell, so they gave me more time, and just, just wasn’t well enough, I applied for an internship, which I got and I did about three or four days there and I was just so incredibly unwell after those three or four days from working, that I just couldn’t continue it, it made me, and then I was ill for about a month afterwards as a result, like really unwell, and so I’ve tried on multiple occasions to return to both work and education and it’s one of those things that, now I realise I don’t think I will ever be in a position in which I’m able to work again. I maybe if I somehow become better from these other things that I’ve developed; I don’t know. Maybe potentially a part time job in the future.
Vasculitis means Holly has lost friendships which were “founded upon being able to do things actively.”
Vasculitis means Holly has lost friendships which were “founded upon being able to do things actively.”
Well in terms of the friends, I mean it’s been very difficult in terms of friends I don’t really have many kind of casual friends as it were, you know, we have like best friends or close friends and then kind of just friends that we sort of see every now and then and all those sort of friends I made at university and those friendships were very much based upon kind of going out socially, as it were, you know, doing things socially like going, going to the pub for a drink or going on a night out, or doing things like that which when I was diagnosed and then I became unwell, I could no longer do.
And so, you know, some friends, some friendships obviously survive that but some don’t because they, they were founded upon being able to do things actively and if you can no longer participate in any of those things in which, you know, all your friends gather together, you, you sort of lose them as it were, unless you make a real effort sort of to keep up with them, which is again also difficult when you’re unwell as maintaining friendships, it sort of, it takes a lot of mental capacity to continually talk to people all the time and keep up with them, which people don’t realise that that actually takes quite a lot of toll on you physically, it makes you physically unwell sometimes to do things which perhaps someone that’s not unwell wouldn’t have a problem with but when you’re physically unwell doing something as simple as having a conversation can actually make you physically unwell too which is difficult to explain to people but it is, it’s what happens.
Holly thinks her future with vasculitis may not be the “happy outcome” or “very inspirational story” that people like to read about.
Holly thinks her future with vasculitis may not be the “happy outcome” or “very inspirational story” that people like to read about.
I think the consultant said to me when I was first diagnosed in hospital they said if, if they had waited an extra week to diagnose me, I wouldn’t, I would be dead, because I deteriorated so quickly and I was so unwell at the time, but now I’m even more unwell, day to day, which is strange really [laughs].
I guess maybe it’s not the happy outcome which, you know, sometimes you might want to read about of sort of, you know, the, the story, very inspirational story sometimes of someone got this very severe thing, then they started treatment and four or five years down the line they’re now doing, you know, ten kilometre marathons and things like that and that’s not the reality for every single patient, in fact I think that’s probably not the reality for a vast majority of patients that gain a chronic illness is, you know, not every single person recovers fully, not every single person, you know, goes into remission, some people develop further things wrong with them, like I have. Some people develop complications as a result of the medication that they’re on, like I have, its, you know, it’s things like that, it’s very, I’d say being part of a support group of people that have the same thing, the vast majority of us don’t have an easy ride with it. The vast majority of us do develop much more complicated problems, and it’s not always just an easy road of, you know, you get unwell, you get diagnosed, you start treatment and then you’re recovered and then you go back to living maybe a normal life or relatively normal life that’s maybe slightly adapted. It’s never, it’s never this kind of start at the bottom, go up and then wooh, it’s you’re fine again, it’s chronic illness unfortunately and disability is very much a sort of, you know, it’s a wave, it’s a, it’s never just a, can’t remember the term, you know, upwards trajectory, it’s very rarely that.
Holly thinks online communities help people with vasculitis “be a better patient to your doctors.”
Holly thinks online communities help people with vasculitis “be a better patient to your doctors.”
I’d say if I had to give a piece of advice for anyone that’s like newly diagnosed with anything, especially something rare, you know, vasculitis is a rare disease is, if there’s any Facebook support groups or some sort of online community of people with the same thing with you, wrong with you, is it’s really, really useful. Because sometimes you get really strange advice, obviously, but most of the time it’s really, really useful for, you know,
someone’s been like, “Oh yeah, no, that’s, I get the same thing happen to me, I went to the GPs about it and they, they suggested this treatment for it” and I’ve actually gone to consultants and GPs before and gone, “Oh you know, I’ve got this thing happening and I am a member of a support group for the thing I’ve got wrong with me, and someone else mentioned that they had the same problem and this is the treatment that they were given for it, is that, is that something I, is that what’s going on with me? Is that something that I could have, you know, have or whatever” and actually it’s actually like worked in that you know, I’ve gone “Oh I’ve heard like I think for example, ranitidine for example, recently has been recalled, it’s just a stomach acid medication and so I just asked on the support group, I was like, “Oh what alternatives have you guys been given to the ranitidine because my pharmacist has been having trouble getting hold of it” and so they gave me suggestions and then when the GP called me to ask me about it they said, “Oh we want to move you onto something else, have you thought about, do you know which one you want to move onto?” and I’ve gone, “Oh actually I’ve heard this one is probably the best pharmaceutically similar to ranitidine, can I have this one?” and then, you know, it’s been like that you know?
It’s a very simple thing like that which can actually improve your health care and it means that, you know, you are a better patient to your doctors as well, you know, it’s all useful to have all that knowledge because you can be a better patient, you can help your consultants to help you, as it were, so you can get the best health care possible so yeah, online support groups are amazing, especially for people that are disabled and chronically ill that you can’t just go out into the world potentially, so the online world of health care is incredibly important I think and has been really beneficial to me, yeah.
To get her physical health taken seriously, Holly feels she has to “pretend” that all is fine mentally.
To get her physical health taken seriously, Holly feels she has to “pretend” that all is fine mentally.
But unfortunately [coughs] unfortunately you’ve got to go in and sort of pretend mentally that everything’s fine, in order to, for them to take your physical health seriously, even though it, yeah, you can have something physically wrong with you and also mentally be not right, because they affect each other, you can have, you can have both at once, but unfortunately sometimes the second you mention, “Oh I’m a bit sad because of this, this and this,” which are things that you would legitimately be upset about, it’s immediately like, “Oh. Maybe this physical health problem that you’ve got is actually, you know, you’ve just got an anxiety problem.”
That’s frustrating is because then you feel like you’ve got to put maybe access to mental health, accessing mental health on hold in order to take- get your physical health taken seriously, even though, in an ideal world, you would be taken seriously on both counts and you would be able to access both at once, but it doesn’t work that way at the minute.