Chrissie

Age at interview: 27

Age at diagnosis: 23

Brief Outline:

After experiencing pain and other symptoms for many years, Chrissie was diagnosed with fibromyalgia by a rheumatologist. Although she finds it a “difficult journey”, Chrissie feels that “it’s one that you will get through some way or another.”

Background:

Chrissie is 27. Ethnicity: White British

More about me...

experiencing ruptured ovarian cysts. She has also been diagnosed with irritable bowel syndrome, clinical depression, and anxiety. Chrissie described how about four years ago suddenly her “entire body just stopped working as it should”, experiencing nerve pains down her legs, arms, and stomach along with feelings of nausea.

After a few months, Chrissie was seen by a rheumatologist who diagnosed fibromyalgia. Chrissie had suspected this herself for a while and describes how it was “just a massive relief off my shoulders having a name” and that she “wasn’t going absolutely mad.” She also felt that getting the diagnosis would enable her to access the pain clinic for treatment – something that she had wanted for a while. 

After the relief at getting a diagnosis, Chrissie describes how she felt frustrated that rheumatology didn’t suggest any additional treatments to what she was already doing other than exercise, which she feels can be difficult when you are in so much pain. However, Chrissie feels that yoga helps her, and she has tried a range of treatments and supplements that she has sourced herself (for example, CBD (cannabidiol) muscle gel, vitamins C and D, passionflower stress relief). Over the years, she has also tried Cognitive Behavioural Therapy (CBT) and seen a variety of therapists.

Although she has encountered a couple of helpful GPs, she has found some of her interactions with other GPs frustrating. Chrissie feels like she has to explain her whole history at every visit and is worried that they view her as “difficult”.

She finds some Facebook support groups for people with fibromyalgia helpful. However, she tries to avoid online groups that she feels are unhelpful because of being “a competition for who’s worse than who”.

Chrissie describes fibromyalgia as “incredibly frustrating”. As well as pain, Chrissie suffers from fatigue and insomnia. Having fibromyalgia has made it very difficult for Chrissie to work. However, she is determined to achieve her career goals despite of this. Although she describes fibromyalgia as a “difficult journey”, she feels that “it’s one that you will get through some way or another.”

Chrissie’s family are very supportive. Her mother suggested her to move back home – something that Chrissie feels very reluctant to do as she is keen to maintain her independence.

Her advice to others with fibromyalgia would be to “find a way to make everybody understand…speak up about it, listen to your body, and don’t be afraid to fight the fight when it comes to getting the medical care that you need.”

Chrissie describes her entire body suddenly not working as it should and feeling extremely nauseous. At the time she thought it might be a ruptured ovarian cyst.

As I got older I kept getting ruptured ovarian cysts, which were incredibly painful but I was put under gynaecology to rule out endometriosis, which they did thankfully. And then about three or four years ago on Christmas Day all of a sudden my entire body just stopped working as it should, nerve pain down my legs, through my arms, stabbing pains in my stomach, and just this feeling of nausea that I’d never experience before.

I sort of brushed it off thinking it was another ruptured cyst, and just my body’d reacted differently, but I was, I sort of spoke to the doctor about it, they got a little bit concerned, but because I’ve had such a long history of chronic pain they kind of were a little bit hesitant in sort of referring me to somewhere else. I think a lot of the time with, people like myself they often think we’re slightly hypochondriacle, which is unfortunate but I can understand why.

Chrissie describes the “big relief” she felt when she finally got a diagnosis.

So I got my diagnosis in April 2016, through a rheumatologist, and I was obviously relieved that there was something there, and I wasn’t going absolutely mad. Then I was referred back to my GP and from that point that was it, they kind of said, “It’s this, off you go”, which obviously is a shame but it was just a massive relief off my shoulders having a name, and I’d sort of been reading up on a lot of different things just to kind of rule out what I think it could possibly be and what I think it’s not, so I’ll go to the GP and sort of discuss through them saying, “This is what I’ve researched, I have a feeling it could be this”.

Chrissie was hopeful that her diagnosis would enable her to finally access the pain clinic.

And then she sort of discussed saying that “Obviously everybody’s case is different but it sounds like it’s fibromyalgia”, and so I had, because I was unsure, I was like, “So are you diagnosing me with fibromyalgia?” and she was like, “Yes”, I was like, “Okay, cool, because like I want to be clear”, because when sometimes they say, “Oh, it could be this”, it’s often brushed aside. So because of doctors’ appointments in the past where they’ve been a little bit like blasé about stuff I kind of had to be like, “Right, is it definitely this?”, so she said, “Yes”, and then I got a bit teary eyed obviously out of the big relief for the fact that finally there’s, there’s a diagnosis and now it means I can be transferred to the pain clinic because all this time that I’ve been dealing with pain, because there’s been no diagnosis for it I wasn’t able to be referred to the pain clinic, but then it was like a two/three month wait for the pain clinic anyway yeah.

Yeah, so I sort of sat down, she sort of said, “I’m really sorry, it’s, it’s difficult to, to take the news”, and I was like, “No, no”, I was like, “These are, these are my relieved tears, they’re not sad tears, and obviously I’ll deal with the knowledge of having something later, but in this moment I’m just relieved”. And, so that was that and I went on me merry way.

Chrissie says that some GPs can be “very quick to get people out of the door.”

But it is obviously a waiting time, but when it comes to GPs, I often find that they’re very quick to want to get people out of the door, if they can’t, if it can’t be fixed with antibiotics they don’t want to see you, that’s my experience anyway. And I’ve not ever seen a private doctor because the fees can be extortionate, so.

But I think had I had private healthcare maybe things would’ve been going quicker and I would’ve got a diagnosis quicker and I would’ve been seen by neurology teams quicker, and there wouldn’t be a year between appointments as well, because that’s, that’s the thing, it’s like you’re waiting a year to see them again and you can, like they say you know, “If it worsens try and ring up and we’ll see if there’s an appointment forward” and there just never is, and then they, if they need to see someone sooner they’ll cancel your appointment and move it back.

Over the years, Chrissie has tried Cognitive Behavioural Therapy (CBT) and seen a variety of therapists. She says it can take a long time to talk to someone.

Right now, no. I’ve tried different forms of therapy through the NHS, things like CBT, and other things. And a lot of them go, “It’s a physical problem, we can’t help you”, and they don’t seem to see that I have these two separate entities; they only see them as one.

And although I am depressed because I’m in pain, I’m not just depressed because I’m in pain, I’m also depressed because of X, Y and Z and, so then a lot of people have been like, “Oh, you’re in pain because you’re depressed”. And then when they kind of go, “Oh, it’s a physical thing, I can’t help you”, or “You’re putting barriers up”, I’m like, “I’m not putting barriers up, I’m literally telling you I physically can’t do that because I have a disability”.

And yeah, so I’ve had some, sort of the CBT people weren’t very great; I just think it was just unfortunate of the people that I was speaking to really.

And then I’ve tried different therapists and a lot of the time they have very weird ways of working, and people say like it takes a while to find the right therapist for you, but when you’ve seen so many and you’ve not had a great time with most of them it, it kind of makes you stop wanting to go to them.

And then before I decided to hand my notice in work I saw a therapist privately, but she was very expensive and, so I couldn’t really afford to go again particularly now that I don’t have a job.

So I think it’s very difficult, and it’s great that the NHS does provide these services but it just takes an awfully long time to talk to someone, and they’re always short term, they’re not ever really long term, and the long term ones you have to pay for but they can be extortionately priced, particularly trying to find someone that deals with chronic pain as well.

Chrissie felt she was perceived as a burden.

Yes, the “Please offer me seat” badge, and like I’d only really wear it when I was really, really bad, and I would be taking off my, off of me when I’m not travelling and like, because I see, I would see customers come in and they’d be wearing the badge and I’d want to ask them like, “How receptive of people for you, and how did you bring yourself to be comfortable wearing it consistently rather than just on the, on transport?” But I thought, “It’s kind of not the time or place to ask them”, but I was kind of desperate to talk to someone that well kind of understand that.

And, so like when I’d go into work and I hadn’t, if I hadn’t taken the badge off yet they’d kind of be like, “Oh, are you going to be good enough to do your job today?” and it was like, I just felt like this, like I was just this waste of energy to them even though I’d purposely fought my way to get in that day, and like I’m feeling fine mentally, I’m just in a lot of pain physically. And like, so they maybe would see it as I’d be taking it off. And then yeah, using like mobility aids just, I’m just too scared to use them, I’m a bit embarrassed and everything like that.

At the time, Chrissie found it hard to get support as she hadn’t yet been diagnosed with fibromyalgia.

And then in my final year it was my hands and feet that just stopped and I couldn’t bear weight on my feet, and, so I would just be trying to walk because I didn’t, I was too embarrassed to get a stick or anything to help me, and, so I would just be struggling along. And then my hands went and, so I was unable to do my sort of part time job or write my dissertation, I couldn’t write my dissertation so I had to get, extensions on so many things, which meant that I handed in much later than everyone so then people were judgemental of the fact that I had this extra time because I just tried to keep it quiet, to the best.

And I kind of went to the disability people and when, “I don’t have a diagnosed condition but this has happened and I can’t write my dissertation, like my hands aren’t working”, and they said there wasn’t anything they could do because I didn’t have a diagnosed disability, which is a, I understood why but it was just kind of like, “Is there anyone you can kind of advise I go to”, and they’d just be like I’ll just get an extension.

Chrissie held off applying for a long time but friends kept encouraging her.

So with the badge someone sort of told me, “Why don’t you just get one of those blue badges?” and I was like, “Well I don’t know how to get one”, and they go, “You just go online and they give it out”, and I’m like, “They just give it out? They don’t want to have like proof or anything?” and they go, “No, it’s quite trusting”, and I was like, “Wow, that’s a first”, because everything now you have to have evidence of your disability and if you don’t have, like a PIP letter then you kind of aren’t treated as if you’ve got a disability even though you do, and I’m still waiting on my results for that.

Yeah, so I kind of put off applying for it for a very long time, and people were just like, “You could get help here, you could get monetary help, which would allow you to pay for things like the chiropractor and therapy that you can’t afford and stuff and it will just give you that help with dealing, with managing your condition and it will help you pay for your prescriptions”, and everything like that. And, so they were just, kept advising me and advising me and advising me and they were like, “Just”, and then it got to the point I was like, “You know, well I will try”.

And, so I applied for it and I’ve had a friend who’s got cerebral palsy helped me with it because she kind of understood how it works and stuff. So I filled out the thing and there was a point where my hand couldn’t write any more so she then took over, so there was a point in the application where my handwriting just changes because it’s no longer me. And it was like with the how my mental health affects working and my daily life, as well as how fibromyalgia affects my daily life.

So yeah, I mean I have a feeling that they’ve declined it because apparently it’s really difficult to be awarded PIP, but. I mean particularly at this moment in time it would be very, very helpful, and then when everything’s back to normal I can seek chiropractors and go back to the therapist and go back to my osteopath and everything like that. I don’t really, yeah, so it’s just a case of waiting and it should be any, any week now that I hear back.

Chrissie can do things like touching her toes but struggles with other pain and mobility issues. She was worried the assessor would think “Oh she’s absolutely fine with her mobility”.

The woman that was doing it was really, really lovely. I tried my best not to get emotional, like I did today, but unfortunately [laughs]. And then, and, so she asked me those questions, but I feel like some questions I should’ve worded differently, because she asked me a question and I gave like a quick answer rather than the long winded answer.

And then I had to do a physical thing, so she had, she had to check my mobility, and I’m relatively hypermobile because I was a gymnast when I was younger so I can like bend over and touch my toes with my legs straight, and that’s not, that doesn’t cause me any problem because my issue isn’t in my lower back, it’s in my upper back, arms, neck mostly and it does sometimes affect my legs.

But, so I was like I did that and I was like, “I shouldn’t really have gone all the way down to the floor, I should’ve just gone almost there”, just in case she thinks, “Oh, she’s absolutely fine with her mobility”, because of that one particular movement, but I was having a really bad pain day that day anyway, so after that, all the things like holding up my arms and stretching them and putting them behind my back,, she could see the physical pain on my face and she could see like the fact I was shaking with pain.

Chrissie found that some of the Facebook groups were too competitive and had “to step away.”

Because although the Facebook groups are sometimes good it, often it’s very much a case of like my horse is bigger than your horse, my problems are bigger than yours rather than someone, so I would go on there and say, “I’ve had this particular sensation here, has anyone else experienced it, and if so, what did you do to ease it?” and some people would say, “Try this, this, this”, a lot of things, suggested were things like Kratom which obviously is illegal in the UK, and then often CBD as well is also mentioned, and then other people would comment being like, “Oh, I’ve had that sensation everywhere for this many years, so I therefore, you don’t have to worry about anything because I’m worse than you are”, and it always, it felt like it’s a competition and it shouldn’t ever be seen as a competition for who’s worse than who, it should be what it says on the tin, a support group.

So I had to sort of step away from a few of them because there was this weird competition of people feeling better than others because they’re in their opinion in a worse place than others. And I think because I, and at the time was still working, they were like, “Well obviously not that bad because she’s still got a job”, and not taking into consideration that I live in [the city] and I live in, like I live in a flat share but I live in [the city], I have to work to pay the rent, yeah.