Mary

Mary started experiencing pain many years ago. A rheumatologist diagnosed her then with fibromyalgia. After trying various treatments with limited success, she is hopeful that a referral to a homeopathic clinic offers a more holistic and helpful approach.

About 15 years ago, Mary started experiencing sore joints, pain in different parts of her body, memory difficulties as well as sleeping and gastrointestinal problems. Additionally, she developed fatigue. Mary initially attributed these symptoms to several stressful life changes. After some time, Mary’s GP referred her to a rheumatologist who diagnosed her with fibromyalgia.

Mary also has other health conditions including endometriosis and severe allergies.

Mary uses medications to help her with the symptoms, though there are some painkillers and other drugs she cannot take due to her allergies. She attended a pain clinic for several years, but found their approach too narro and not well-suited to her personal situation. However, she did benefit from consultations with the physiotherapist, which helped her to better understand pain processes and when to seek medical advice. In the past, Mary tried various other approaches such as cognitive behavioural therapy and mindfulness. She also paid privately to see osteopaths, chiropractors and hypnotherapists, though did not find these particularly helpful.

Mary has a good relationship with her GP, who she feels is interested in her health and listens to her concerns. Her GP has recently referred her to a homeopathic hospital. Mary is hopeful that a more holistic approach, which treats her as a whole person, will be a positive step which she is keen to try. Mary wishes healthcare professionals could have supported her to focus on her strengths and what is achievable for her.

Mary acknowledges the constraints of the healthcare system. However, she thinks that it would be helpful for people with fibromyalgia to receive care based on individual needs from the same healthcare professional or department. Such support should be accessible to people when in crisis. Mary thinks this approach could provide better reassurance to people with fibromyalgia when they feel distressed and overwhelmed.

Although Mary feels that generally there is better awareness around fibromyalgia, more understanding is needed. Mary observes that the public can be less sympathetic about the condition, particularly because people with fibromyalgia do not always look unwell. This can lead to situations where people with fibromyalgia start to question themselves or experience feelings of guilt. She also finds it frustrating that some healthcare professionals still do not recognise fibromyalgia as a real condition and that many behave very dismissively. This means that people have to justif how they feel to be taken seriously. Mary thinks that healthcare professionals should be more empathetic because people’s experiences of fibromyalgia are ery, very real

Mary describes living with fibromyalgia as climbing a mountai every day. She now tries to listen to her body and assess daily what is possible to do. Another coping strategy she uses is keeping notes (for example, about appointments). Although Mary’s friends are very supportive, she finds it difficult to rely on them, as she was an active and independent person before her diagnosis. However, Mary appreciates their support, which helps her to cope emotionally and practically with everyday tasks on difficult days.

Mary tries to listen more to her body now I’m not going to stress about it whereas before I would get really upset with myself.

Age at interview 59

Age at diagnosis 43

You just have to get on with it, you, what I do now is I don’t try and do everything that I would’ve done in the past, I break it down into, Well today I can do tha or I can attempt to do tha, and if I can’t do it I’ll leave it, [voice tearful] I’m not going to stress about it whereas before I would get really upset with myself.

Now I tend to listen more to my body, when it starts to protest and I’ll just leave whatever it is, and it could be something simple like cleaning my kitchen floor, I just can’t do it you know, my arm’s so sore, my back’s so sore. Just to coordinate, to make decisions, easy things, things that other people don’t think of you know, they just do it. When you’ve got fibromyalgia it’s like every day is climbing a mountain. That’s the only way I can describe it.

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Mary wants a more holistic approach where you’re looking at a person as a whole person rather than just bits of that person, as to what could be wrong. She would like a special clinic for people with fibromyalgia.

Age at interview 59

Age at diagnosis 43

And I think a holistic approach where you’re looking at a person as a whole person rather than just bits of that person, as to what could be wrong, what is the clinical diagnosis, let’s look at everything and see if there’s a common thread, if there is one common denominator, that would make it easier for me.

And, with that holistic approach, what kind of care or support would you want there?

I don’t know because this is new to me Stefanie, I don’t know much about it at all. I think it would be more pastoral care, rather than more drugs, because my tolerance to drugs is very, very low. Maybe somebody that understands how pain and fatigue and this, these horrible feelings that you get, this knot in your stomach every day that something terrible’s going to happen, maybe just somebody who actually understands that and says to you, Do you know what, that’s okay that you feel like that. We know that’s how you fee, just reassurance, reassurance is huge rather than, You’ve got this, away you go and deal with i.

And if you’re thinking about pastoral care, is there something specific you would be thinking of who could take on this kind of support role?

I’m assuming that they have, nurses or health professionals who are trained, to look at somebody as a whole being, that’s my understanding of it. I may be proved to be very, very wrong, I don’t know, I don’t know much about homeopathy or holistic approach. But that’s what I would hope to get from it, that somebody could help me to understand, what’s going on when I’m in a flare up, that you know, that what I’m experiencing is normal for that diagnosis, that I’m not sitting here tearing myself to bits saying, This is ridiculous, just get on with i.

And, as part of the support, you’re just explaining, how often do you think would be you know, in your you know, opinion, to see that person for support and for how long?

Well I would hope it would be maybe they had like a drop in clinic or something like that, or an appointment where you’re seen at least on a monthly basis until they feel that I’ve reached a certain sta
Because I don’t know the background, I don’t know what to expect, but I’m hoping that when I go there I get to speak to somebody and I’m not just sent away again, Yeah, what you tell me, yeah, you’ve got fibromyalgia, away you g. I need somebody to just reassure me.

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Mary was referred to a psychologist who said There is nothing I can offer you herethat you’ve not done before.

Age at interview 59

Age at diagnosis 43

Oh, she referred me to a psychologist who kind of took a history and said, all about you know, my accident, the illnesses that I had, how they made me feel and then said, Well there’s a really good service in [the local area] that you can phone called [name removed.

So I phone [the mental health support service] and they said, No, I’m sorry, we’re not the right organisation for you, we can’t help yo. So when I went back to my GP, my GP actually referred me to [that mental health support service] and a clinical psychologist from there phoned me about two weeks ago, I explained I’d been sent from the pain clinic, blah, blah, blah, and she said, I understand why the person you spoke to said we can’t help you, because anything that we suggest you’ve already don.

Yeah. Yeah. I mean it was good of them to phone me back, and the psychologist I spoke to was really nice and she just said, There is nothing that I can offer you here within this [name removed] organisation that you’ve not done before. So you know, for you to attend here, would be wasting your tim, and I said, Well my GP’s actually referred me on to the homeopathic hospita, and she said, Oh, I think that’s a great ide. So it was like a tick bock, a tick box exercise or her, I’m not their books, Move her on somewhere els.

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Mary said that to control her pain makes her lose the ability to function.

Age at interview 59

Age at diagnosis 43

it’s just not the case, I just, take the medications that I’ve been given knowing that, hopefully I’m not going to react to the drugs that I could take years ago all of a sudden give me anaphylaxis. So it’s like, it’s like playing Russian roulette, they’re terrified to change my medication because just now what I’ve got I can take. But if I take all that I am prescribed daily it just wipes me out, I can do nothing other than lie in my bed or lie on the couch, because I can’t function. So to control the pain makes me lose the ability to function, and that’s horrible.

So what do you do, it’s catch 22, do you take all the medication and just spend the day spaced out, or do you take some of the medication, you’re in excruciating pain, but because you live by yourself you’ve got to, you’ve got things to do, you’ve got to function as a human being.

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Mary paid privately to see a hypnotherapist, although she didn’t find them particularly helpful.

Age at interview 59

Age at diagnosis 43

Yeah, for years, I’ve used osteopaths, I’ve used chiropractors, I’ve used private, hypnotherapists; the money that I have spent over the years is horrific.

What kind of impact did that actually have?

None, absolutely none, but you go because you think you’re doing something, you’re making this, these problems better, but finally the realisation hits that no, you’re not, you’re just wasting money.

And has been you know, out of this based on that experience you had you know, can you see any kind of differences in the care provided between say private as well as, NHS?

Absolutely, if you’ve got money they’ll tell you anything that you want to hear. Unfortunately that’s the way it is that if you’re, you’re willing to throw money at a problem, they will treat you ad infinitum whether they’re doing you harm or good or whatever. But no, I don’t have a lot of faith in things like that now, but at the time you will try anything.

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Mary describes trying to manage by writing things down to help her remember and also getting support from her friend who reminds her about appointments.

Age at interview 59

Age at diagnosis 43

And then I started getting really forgetful and, just brain fog, like I would walk into a room and think, Why am I here and what am I doing and that really, really worried me. So the, my GP referred me to a rheumatologist and they, after asking me lots of questions, he was particularly interested in an accident that I’ve had, when I was 28 where I fell down some stairs, went through a glass door and I ended up having discs removed in my spine.

And the brain fog is something, that I try to manage by writing things down, like appointments, I’m hopeless, I need to be prompted. I have a very good friend who prompts me for appointments who kind of knows when maybe I don’t recognise that I’m struggling a bit, but she does now you know, and she’ll say, What’s wrong and I’ll say, [My friend], my mind’s just gone completely blan. And it really upsets me [voice tearful], because it’s not nice, when you think, I’ve got something to do today and what is it I’m supposed to do and you get overwhelmed by everything, you just feel as though you’re drowning.

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Mary says over the years her life has become smaller and smaller.

Age at interview 59

Age at diagnosis 43

And I think most of my really good friends kind of understand that now, that it’s not just I’ve opted out you know, I was the kind of leader of the gang, I was the one who organised the girls nights out, Let’s go away for the weekend, let’s do thi, and over the years your life just becomes smaller and smaller and smaller.

Because everything in life is balanced Stefanie everything in life, every action has a reaction. So maybe I focus too much on what I can’t do, the things that I’ve had to give up, the lifestyle changes that I’ve had to make, because that is now normal for me.

Nobody’s ever shown an interest in, Well what can you do, and what are your strengths and. That part of my life now has gone because nobody showed an interest in it for so long, and I’m the biggest contributor to that.

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Mary says fibromyalgia is horrible and that every day is a struggle. When she uses her crutches she feels people are more sympathetic as they can see that something’s wrong.

Age at interview 59

Age at diagnosis 43

No, no they don’t they you know, you do things, subconsciously you know, all day you have you know, these thought processes in your head like you know, you get up in the morning and you have a shower and you brush your teeth and you put your clothes on. Some days to me it would be easier for me to clean your oven with a toothbrush because that’s how overwhelming it makes you feel.

it’s just horrible, it is horrible, and you just struggle every day, and people are only sympathetic for some of the time because you know, friends that maybe pop in will say, But you don’t look sic, you know, because you function, maybe not to the best that you have functioned before, but you don’t look sick. Yeah, some days you look bloody awful, and there are days that I look as though I’ve been dragged through a hedge backwards, but it’s just I don’t have the energy, I don’t have the wherewithal to do it. It is a constant battle, emotionally, physically; it’s awful.

When my back is really bad I use crutches and I think I get more sympathy if that’s the right way to explain it, because, Well she’s using crutches, there must be something wrong with he, you know.

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