Systemic Vasculitis

I decided right from day one that I was going to be completely open and honest about it. I know that a lot of people don’t like talking about their illnesses and I’ve actually had colleagues at work - you know, and I decided, I asked, as soon as I became ill the first time around, I actually asked a colleague at work to send round an email to everybody telling them exactly what was going on. And, and the reason for that is that I think everybody benefits by it. I think it’s better not to have secrets about your health because I think it leads to greater understanding of what it is to be ill and to have a chronic illness.

And, and the funny thing is that since then, several people in my personal life and in my professional life, several people have actually come forward to me and they’ve said, “Actually Steve, the thing is, I’ve got a chronic illness too, I’ve just never told anybody.” So, and it’s amazing you know, it’s chronic illness is all around us, all the time and I believe we’d all benefit from being more open and honest about it, and I think it would manage our expectations of each other, much, much better than we generally manage to do.

I mean, people didn’t even recognise me. I could walk down the street and genuinely, somebody would walk past me, and I’d have to say, “Oh, it’s Nicola?” And then the other thing would be their faces. So, some people would just be, like, in shock, you could see them, which sounds extreme, but it was like that. You could see people thinking, “What on earth has happened to you?”

So, then I’d need to explain. So, my illness became me, it became, I was carrying it, it was an obvious thing. It was like, you know, I mean, obviously nowhere near as extreme as something like losing a limb or something, but I mean it felt like, “Here I am, and I am no longer who I was, and now every time I, I leave the house I have to tell you about my illness.”

And that felt awful actually, because it just then brings, like, “Oh, no,” like “oh,” and on top of everybody knowing everything else about my life - and they knew my mum was dying – I [sighs], I hate that “poor me” thing, like I just, I can’t tolerate it somehow because I just, it’s not in my personality. So, I don’t mean in others, I mean in me, I don’t like it for me. I give lots of compassion and empathy through my job, I run a charity for bereaved parents so it’s not that I can’t feel for people, I feel deeply, deeply for people, but I, for me it didn’t feel right that every time I was speaking, people were like, “Oh, and how are you?” and “I’m so sorry to hear,” because it just felt like I wasn’t Nicola anymore. And I think it, the steroids really took that away for a long time, so even if I felt a bit better, it was the steroids ruled that sort of communication, almost. It was such a barrier.

There’s also the part that you don’t want to be defined by your medical conditions. I remember after one failed transplant, thinking, “Oh, I can’t do that, I can’t go to the Co-op when everybody’s giving me the ‘awww’ face.” You know, “What a shame.” I thought, I went and got my hair dyed bright pink and I thought, “That’ll give them something different to talk about when I go in.” [Laughs]. I’m like, now it’ll be, “Oh, that poor lassie never got her transplant, look what she’s done to her hair.” [Laughs]. Just, it’s people’s perception of you. You are still you.

How do you explain it to other people?

I don’t. If anybody ever asks, I just say I’m fine and that is the stock answer to everybody. People - to give them their due – there’s a percentage of people who are interested and would like to know more. But mainly when people ask how you are, they, they don’t want details, you know, they’re quite happy with “I’m fine” and move it on. I’ve got close-close friends who’ll dig deeper than the “What does, what does ‘fine’ mean today?” you know? We have different acronyms for the F, the I, the N and the E, depending on [laughs] where we’re at. So yeah, but for the majority of people, I don’t, I don’t even try to. I think it would be too complex, too time-consuming, and it’s not something I really want to dwell on.

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.

My friend that broke her ankle, [laughs] when she got in touch with me the next day, we were talking about it, me having this and her having a broken leg, and I said to her, “Do you know,” I said, “The way I can kind of,” I said, “If you had both your feet and legs in casts, thick, you know, hard casts,” - stookies they used to be called - “And then you walked on them. That’s how I am. I can’t feel the ground, but I know it’s there.” It’s like having a stookie on, you can’t feel the ground, but you know it’s there. If you kick something you can’t feel it but you’re aware of it and then sometimes these nerves obviously fire and you get this kind of, it’s almost like an electric shock feeling.

And so, when I was talking to her about it, she says, “Do you know, it’s funny having this now because I kind of get what you’ve been on about when you mention it?” Because it’s so difficult to explain to someone that you, because I had people say, “Well how can you feel, how do you know you’re walking?” And I say, “Well because I know it’s there.” My balance isn’t, because I can’t, but it’s like with stookies, you don’t, your balance isn’t always the way it is, is it, great with them on.

But it’s probably the best way you can actually, because I’ve broke my leg before so I kind of know, but it’s probably the best way to try and give a description of it is that you do know the ground’s there, but you just can’t feel it, and of course that affects your balance and, yeah, it’s a bit odd.

Well, I’ll tell you what doesn’t help: people telling you it’s all in your head. And I have had family members saying to me, “This is all in your head.” Okay? And also, people are sympathetic - for a little while. You know? Even your own family are sympathetic - for a little while. My own husband - for a little while. But then they get sick of it, you know, and you, nobody asks you anymore how you’re feeling or, you know, when it goes on so long, you know, if you’ve an illness that gets better, people are very interested, know you’re getting better, they love to tell you you’re getting better, and you know, “Oh, look at, you’re great now,” but they really don’t want to know about long-term illness. You know. And everyone, you know, the friend that I have here locally who’s had it too, says exactly the same. People don’t ask anymore. They don’t want to know anymore.

And I think that’s… so I think the only people that you can talk to are people who have had it themselves too, or had an illness like that, you know, that’s lifelong illness. That, you know, because you won’t get sympathy, or you won’t get help. And if I’m not feeling well and go to bed, my husband will just shout up, “Are you coming down for dinner?” and when I come down there’s no dinner made, I just have to make the dinner, you know? So, it’s just, that’s just life, you know, just because if you’re fit to be up and about, you’re fit to do everything. That’s what I find, you know, so. That’s why I think you’ve got, I’ve got to be self-sufficient because I just feel there really isn’t anybody out there, you know, will keep me going except myself. So that’s what I feel about it all.

It must be – it must be strange trying to describe it to your friends and…

Yeah. Like, I often say to them, like, I’d say, they’ll say, “Oh, what’s wrong?” and I’m like, “Oh, it’s just ‘the rash’.” I call it ‘the rash’ because I don’t know what else to call it. And like, if they see it, they obviously [puts on jokey voice] “There’s ‘the rash’.” Like, we joke about it because they get it now, it’s not - you know, it’s just part of me and I sometimes get it at work, and. You know? That’s just life, I can’t, I can’t make it go away. And there’s nothing I do specifically that it comes. It just one day it’ll decide. And like I’ll come down in the morning and I’ll say to mum, “Oh, the rash has appeared,” or - and sometimes she just forgets herself and she’ll say, “Well, what have you done differently?” and I do get quite – I’m like, “Nothing, I haven’t done anything differently.” Like, I hate when people say to me, “Oh, is that an allergic reaction?” or, you know, “Have you eaten something?” And I know that’s, that’s normal, I would probably say that to someone, but it’s so repetitive. I’m like, “No, I haven’t eaten anything. No, I’m not allergic to anything. It’s just life.”

I do something, I’ll, you know, I could bring me jigsaw by me and, you know, do a bit of a jigsaw or I do reading, I’m not sort of just doing nothing, but actually not doing anything physical. Because you just can’t, and if you do something physical you can’t do it the day after. And that’s the thing, people say, “Well why can’t you come?” - even me dad did, you know, “Can you come to the gym tomorrow?” Well, I’ve just done an hour and a half exercise, I can’t do another hour and a half 24 hours later. Me body just won’t allow it and I’ve only got to do so much, and it is the tricky thing of people trying to understand that.

Or if I go to the, me snooker place, where I go, and I’m struggling with me breathing and I say to somebody, “I’ve had a frame, I want a rest.” And you’ve got some of the, the older fellas they’ll say, “Oh, come on, surely you should be able to play another game.” But I look fit and healthy - and I am, compared to what I was when I was at me illest at under ten stone, and now I’m about 13½ - which sounds a big jump, but really at six foot tall you should be around 12, 12½, 13 – because of it all being internal, and there’s probably scarring on me lungs from all the trauma it’s had to cope with, that nobody can understand it.

And then you have your friends and your family, I remember my mum asking me for a long time, “And now you’re fine, yeah? Now you’re fine.” She doesn’t seem to grasp the concept that, yeah, I’m fine, but this is a long-life condition. So that doesn’t mean that next time when I come to, to visit you guys, I’m not, when I went for the holidays in 2019, in December, I was at home, resting, for four or five days? 

And everybody was like, “Okay, why do you need to?” Yeah, I need to rest, I need to… So, I don’t have the same stamina to actually go out and meet people and do this, and, so that, that is gone. And there, and people see you, talk to you, you look fine, you’re healthy, why, what’s the problem? So that, that’s the only thing. And you, you tend to lose friends on this, but you know, not everybody, you can’t… It’s difficult to maintain a friendship in this thing. And you have to remind people about your condition, like for example, I had a, for my birthday, for Facebook, you know, I’ve asked people to donate for a charity sponsoring vasculitis. And I gave like the background, I was like, you know, “My kidneys are not working well,” and I had a lot of people saying, “Oh, but what’s wrong with your kidneys?” “You know, from last year.” “Oh, yeah, but I knew you have vasculitis, what’s wrong with your…?” So, people don’t remember and don’t, “Yeah, but that was last year, now they’re not better?” “No, they’re not.” “Ah.” 

So, there’s not a lot of knowledge and there’s not a lot of, how to say, when you explain to someone about this, I don’t think they understand, I don’t think… I don’t know. And when they see you and they, when they talk to you and you look fine and you, you know, they were like, “Ah, yeah, everybody’s tired,” you know? So, everybody has that, everybody. So, you know, you can’t, and you need to explain to them that your level of energy is not like their level of energy. 

But my husband, unfortunately he’s - well unfortunately or fortunately - he’s from India, and we’d by this, by 2004 we’d been married - from ’97, ’98, ’99 - about seven years, so we’d been married about seven years but he didn’t want to learn our language. So, it was very difficult for me to make him understand what my illness was and how it’s affecting me. I mean he, obviously he could see, but he didn’t want to accept it at that time. So, it put for me it was quite, quite, quite difficult he was thinking that, “Oh, she’s back at home now and she’s doing really well” – well, he thought I was doing well, and he thought life would go back to normal, previous, to my illness being diagnosed and everything, when I was well basically.

So, he couldn’t, I couldn’t explain to him in Gujarati, which is our language that we speak, I couldn’t explain to him exactly what my illness was because I had no words to explain to him, what the immune system is or even what they call it in another, in Gujarati, because I have, you know, growing up in this country, you don’t think about things like that because it’s never going to happen to you.

So we found that very, very difficult, and for a while we were struggling, you know, to keep our, relationship on a good footing because there was a lot of tension, because I can’t, I couldn’t understand why he didn’t want to understand, and I couldn’t explain it to him in Gujarati, which is, you know, he might have been able to grasp at that time, or he may not have been. So, it was all sort of swings and roundabouts unfortunately.