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by Beth, Ally, and Laura
This blog post features Beth, Laura, and Ally from LUNA talking together (on video call because of social distancing life!) about their experiences of being diagnosed with long term health conditions. They talk about how they found this, and the similarities and the differences in their experiences.
What was your experience of getting a diagnosis?
Beth- I was diagnosed with JIA (Juvenile Idiopathic Arthritis) when I was really little, so I don’t really remember the actual diagnosis, but I think it was tricky; they thought it was TB (tuberculosis) or lots of different things at first before they thought about JIA.
Laura- It was actually all quite quick. I was 16 and it was just at the beginning of 5th year which was our most important year at school. I had stomach flu-esque symptoms but then when they didn't just go away I kind of knew that there was something more going on. Also, because my mum is a GP that helped with thinking we should do something about it so we went to the GP pretty quickly. They did a stool sample and that came back abnormal pretty quickly which is quite a reliable indicator of UC (Ulcerative Colitis), so that was only a month from becoming symptomatic to pretty much having a diagnosis which I think is really really fast for an IBD (Inflammatory Bowel Disease).
Ally- Same as Laura, I was 17 and it felt like it took ages to get a diagnosis, because of my age and there was so much happening all the time, like A-levels and social things. It was a bit over two months between starting to have seizures and being diagnosed with epilepsy, but it was frustrating because within the first week of having seizures they were pretty certain that it was epilepsy, but I had to be seen by the neurology first seizure clinic in order to get a diagnosis, and I couldn’t start medication without this diagnosis. There was an 11 week waiting list for the clinic. It was frustrating too because all the guidelines said that from having your first seizure you should be seen by neurology within 14 days and by the time we were talking about these 11 weeks 14 days had been and gone because the referral got lost the first time and like things like that kept happening. So retrospectively, having talked to other people for whom an epilepsy diagnosis takes years I know I was pretty lucky but at the time I felt so long. I think it was lengthened by the fact thatI kept having seizures and was getting worse and had been advised to go to A and E every time I had one, which meant life was really disrupted and my family were really stressed and we knew we should have already had help if the NHS wasn’t so chronically underfunded, so yeah it felt like a frustrating process.
What do you remember about getting a diagnosis?
Beth- Even though I don't remember actually being diagnosed, there were lots of things about it that were constants growing up. Like for example I had to have eye tests twice a year because JIA puts you at risk of uveitis, and I remember my parents being really worried about things getting bad again, so it was always there even when things were pretty in remission. Then when I was 11 my JIA flared up again and it was kind of like a re-diagnosis because all of a sudden there were loads of treatments and appointments and symptoms and it was affecting me and we were talking about it as something currently happening not something that had happened. I kind of just tried to ignore it and pretend like it wasn't happening though.
Laura- It's weird because it didn't feel like some big moment because, like I said before, I kind of knew it was coming. All the symptoms I had been experiencing matched up with UC, and I had done lots of research so I expected to get this diagnosis. I went for my colonoscopy and I remember going straight to adults and being in the waiting room and it was me and these older women and I was just kind of panicking because I didn't really see anyone else like me there. Then afterwards I remember the consultant coming in and giving me an information pack on IBD, saying he was almost certain I had UC, and I was smiling because it was a label and it wasn't cancer, and they were kind of like do you know what this means, like why are you smiling? I think that when they explained that it would flare and be in remission and come back I don't think I actually clicked that or could actually comprehend that.
Ally- I agree about the label thing, especially when you’ve been expecting it. Just to actually have it feels like a positive thing but yep with no real comprehension of what that actually meant for the future.
Beth- I think that having a label for something is so important, because that is what can allow you to access support and research, and have conversations that little bit easier. It also keeps coming up over and over again like when you move for uni or if you are seen by a different service or department then being able to be like oh this is my label makes life so much easier, and so because things are ongoing it does feel positive to have that label.
What were your experiences with talking to friends about your diagnosis?
Beth- Yep, this is definitely something I found hard, and didn't tell anyone for 14 years (laughing). Even when things started to flare again when I was 11 I really didn't want to talk to people about it and would just keep saying I had broken ankles and wrists. I was really conscious of it being an “old person's” thing that people's grandparents had. I found it really hard to start those conversations like it’s not something that just comes up with friends. It didn't help that when it got to the point that I couldn't really hide it anymore and had to tell friends they weren't great about it, which put me off telling people again. Around this time my physio and OT were tearing their hair out like “just tell your friends and then they can support you and carry your bag” etc! I was lucky though that the next people I talked to about it, and from that point onwards, were so, so much better about it all.
Laura- I definitely did, and still do find it so difficult talking to friends about it all. Even though I know it’s not, it still feels kind of like admitting a kind of weakness? I was missing lots of school so obviously my friends were asking. I would either say that I just kept getting stomach flu but obviously I don't think people really believed that because I was off so often. Or I would tell people the name of what I had (Ulcerative Colitis) but that didn’t really mean anything to anyone. There was a girl in our school who had Crohns (another form of IBD), so sometimes I would say to people it was similar to that but I don't think they really knew what that was either apart from the name. I think one thing that worked really well was friends asking questions as a way to start conversations. I had one friend, who I so appreciate, who did lots of research and then would ask me lots of questions which then started conversations.
Ally- Defo a common theme of finding it hard to talk to friends about it. I think I also found it felt like all these really scary new things were happening and I didnt even know what was happening or understand it, so it was hard to explain. Now there is more a thing of at least I feel there is a balance of I have information and knowledge and am able to answer questions if people had them, but at first I knew as little as everyone else, and had just as many questions. It wasn't a massively something I could hide or avoid talking about, especially when I started having seizures at school. I had such a wonderful core group of friends though and they really rose. Like when I had my first seizure a school my friend Izzy was there and stayed with me the whole time till the ambulance arriving, which isn't something friends should have to do and I wish she hadn't had to, but which all my close school friends ended up doing and I can't thank Izzy and all of them enough. I still find it hard talking to friends, or like just people, but i think having had such good friend experiences makes it that bit easier.
What about talking to other people about it?
Beth- I often found it difficult with teachers etc wanting to talk to me about it when I just really didn't want to talk. Like in primary school I can remember being on residential trips and teachers wanting to check in with me and wanting me to slow down and just kind of avoiding them by running off because of not wanting to talk about it. Often with both teachers and family it was definitely more of a case of them telling rather than them listening, kind of a thing, which at times was tricky.
Laura- I talked to my mum quite a lot about it too. It was quite handy with her being a GP because she was able to tell me about what her patients would do to help etc. Saying that though, her being a GP could make it tricky too because I wasn't talking to her as a patient, but as her daughter. At school with teachers I had some good experiences and some bad experiences with teachers but one of the things that definitely helped was having my guidance teacher and being able to have one teacher who I could communicate things to and then she could tell other teachers rather than me having to talk to all of them about it, because like I said some of them really weren’t understanding.
Beth- Yeah I think the lack of continuity with Form Tutors is something that made it difficult. I had like 7 different form tutors between Year 7 and 11 which meant that I didn’t really have that thing of being able to develop a relationship with one teacher who could then communicate with other teachers. This changed in Sixth Form though because the two heads of sixth form were so good, and I had one of them for chemistry and one of them for history and politics so I saw them both regularly. It made such a difference because they were so good at checking in and knowing what was going on and making things work.
Ally- Same as Beth I was so lucky with sixth form teachers (we had an overlap in teachers!), which is when things started to happen. It was a lucky coincidence that the first teacher I talked to about it all, their partner had epilepsy so they were super understanding and easy to talk to about it all. I had come in to school for a coursework day or something, and had spent the night before in A and E and hadn't been back to school since things had started so this was the first conversation I had with a teacher and I was really, really tired and wasn't expecting much from it but it turned out to be such a positive experience. They were then like don't worry I understand how difficult this all is, I will try and sort out the school side of things. I think having my first experience talking to teachers as such a positive one was a really good thing.
These have been some little bits of our experiences, and despite our different ages and circumstances and conditions when being diagnosed we found a lot of similarities in our experiences. We would love to know how they compare to your experiences and hear about your experiences!
Laura, Beth, and Ally X
(Originally published on the 19/04/20)