Susan - Interview 33

Age at interview: 55

Age at diagnosis: 52

Brief Outline: Susan has been registered as disabled since she sustained a spinal injury in an industrial accident 15 years ago. She has a complicated medical history and suffers from a number of medical conditions including fibromyalgia, adrenal fatigue, allergies, Reynaud's, peripheral neuropathy, and ME. She was diagnosed with a TIA several years ago after an episode where she felt confused, spaced out, unable to coordinate her speech and thinking, and generally confused and muddled.

Background: Susan retired from her job in pharmacy sales 15 years ago following an industrial accident. Ethnic background; White British.

More about me...

 Susan has been registered as disabled since she sustained a spinal injury in an industrial accident 15 years ago. Susan has a complicated medical history and suffers from a number of medical conditions including fibromyalgia, adrenal fatigue, allergies, Reynaud’s, peripheral neuropathy, and ME. She was diagnosed with a TIA several years ago after an episode where she felt confused, spaced out, unable to coordinate her speech and thinking, and generally confused and muddled. At that time she was prescribed 75mg Aspirin and her medical notes confirm the diagnosis of TIA. Since then she has experienced a number of similar episodes which she believes to be further TIA’s, but doctors have been reluctant to confirm that these were in fact TIA episodes, suggesting instead that anxiety and stress are the main cause. This has led Susan to challenge the medical professionals she has encountered because she finds it confusing and unhelpful to have different doctors giving different opinions about her medical status. Susan feels that she has not been listened to and finds herself ‘battling’ with doctors which in itself makes her feel stressed and anxious, as well as frustrated at not being heard. She says that she hasn’t been given the relevant tests and scans that would provide a definitive diagnosis and she feels that this is because she has been labelled as neurotic by doctors. Susan is very keen to share her experience because it can be difficult to challenge medical opinion and she feels passionately that people should stand up for their rights. 

Susan has been prescribed a lot of different medications for the various conditions she experiences, but is convinced that many of them have side effects that can make her feel worse overall. When she had the original TIA she was diagnosed with Aspirin and she feels that taking this has exacerbated the symptoms of some of the other conditions she has. Susan is keen on alternative therapies and finds sometimes these can help alleviate her symptoms and keep her spirits up, although because of her complex medical history it can sometimes be difficult to ascertain which symptoms and side effects relate to which condition. Susan would like to find out more about her medical and genetic background as she was adopted at birth, and is currently beginning a search for her birth family or records that might throw more light on her family of origin. 

 

Because Susan lives alone she has a friend who acts as her informal carer, however she does sometimes feel fearful that she could have a serious stroke whilst alone and not be able to alert anyone to help. She thinks that it would make sense for doctors to monitor patients who are at risk of further TIA or strokes more closely to ensure that they maintain a healthy lifestyle and outlook, and feels strongly that doctors must listen and take notice of their patients concerns, rather than dismissing them. 

 

Susan is convinced she has had a series of TIAs but doctors disagree and say she hasn't

 

I was made redundant and then I went into sheltered housing where I had an accident and injured my spine. It went to court but because my father was dying of cancer I gave up with all of that. And I had illness. And ME came in and fibromyalgia and a lot of other medical conditions. And I’ve switched to many doctors but I was diagnosed I would say about nine years ago I felt that I wasn’t right so I went to my GP and I was, and had hospital tests, lots of hospital tests because they tried to rule out MS. I’ve had a battery of tests, feeling unwell. And then I was put on 75mg aspirin, one a day and from that I’ve gone downhill to the point of having carers, being on Medic Alert and on Lifeline. Lots of vagueness and just really out of it. And because of the stress that I’ve undergone which is very long and complicated I know I’ve had a lot more.

 

So I’ve had a lot of drugs for different conditions, including the ME and CFS and the spinal injury. And then got very frustrated with all the tests at the hospital, kept collapsing and I kept arguing that I’d had more TIAs. Continually at the hospital and then they said that “You haven’t had any.” And I said, “Yes, I have.” So I went and got my medical notes out, challenged the consultant that I was seeing, had lots and lots more hospital appointments and challenged them to the point that I’d had a lot more. And I’m still fighting to this day.

 

So how many would you say you’ve had then, the TIAs?

 

Well, I consider that I’ve had about six. But because I’ve changed doctors and I’ve had collapses and I’ve had a lot of things ongoing, one’s saying I haven’t, one’s saying I have.

 

And how does that feel for you having this ongoing argument with medical professionals?

 

Well, I’ve really, that’s caused me more stress. And because I keep a lot of my forms and I check things through, because I’m that sort of person they just kept putting it down to stress. They didn’t deny I’d had the first one but I said I’m having a lot of other things that are happening and I know I’m not well. And I’ve challenged them and I’ve put in complaints to different places. But you just, it’s the system.

 

Susan says the doctors she has seen don't agree on the diagnosis of TIA and she doesn't feel she has been given proper treatment. 'I'm still fighting to this day'.

I’ve always stood up and I’ve always challenged everything. And I just feel that people are, they just don’t, I’ve never had prop, what I call proper treatment, for now that I’ve read up I’ve never had scans or anything. I’ve asked for scans, I’ve asked for all sorts of tests but I’ve never got a …

 

And why is that? Is that because somebody that you’re dealing with doesn’t feel that, that you’ve actually had a TIA?

 

That’s right. I changed doctors for that reason. Because I felt that I was going for appointments and I wasn’t being ….

 

So although…

 

.. taken seriously.

 

.. you were put on aspirin you were actually not given any further tests or …

 

No. No. No. But I had numbness. I had numbness down the left hand side. I was dropping things. I was shaky, I was confused.

 

And people just think you’re a hypochondriac.

 

And what does that make you feel when you kind of realised that that’s can, can some, sometimes people’s perception?

 

It’s scary. Because I’m now housebound more than I am going out because of it. And I feel if I’d had more, I actually asked for a brain scan and I asked for lots and lots of tests and I challenged the consultant and he just put it down to stress, which made me very, very angry.

 

And what kind of interactions did you have with that person? Was it, was it a difficult conversation?

 

It was because I went there, I waited weeks for a hospital appointment and then I challenged him and because I actually proved that I had my medical notes out and I’d been hospitalised in [place], because I’ve moved from [place] to this area, he was saying one thing and I had it down on paper that it was there written TIAs.

 

Doctors are not gods, nor are consultants. And they don’t like it when you challenge them.

 

And when you say they didn’t, what kind of reactions have you had from those people?

 

They don’t seem to they seem to dismiss you and say that you know, you’re either a hypochondriac, not in my case because I know I’m not and if anybody did say that to me then I’d have, I mean, I do a lot of reporting in to the PALS at the hospital with different things that have happened to me.

 

Oh, the Patient Liaison …

 

Yeah.

 

Yeah.

 

And everybody gets two goes with me. They go, I’m very nice, I’m very polite but if they don’t get their act together then I go to the top.

 

So what would you say to doctors who don’t listen, or don’t seem to acknowledge what you, your point of view?

 

Take more notice. Look at the person that you’re seeing, don’t put your head down and write, trying to write something and get you out the door. And this, this doesn’t, I’ve got a very good GP at the moment who’s listened to me and he’s trying to help me. But previous GPs, they’re just all too quick to pick up their pen, write a prescription and get you out the door.