Fiona

Age at interview: 25

Brief Outline:

Fiona has asthma, type 1 diabetes and epilepsy. Her asthma is well controlled with inhalers. She has good and bad days with her diabetes. Drugs have stopped her epileptic seizures, although she has become forgetful.

Background:

Fiona is married and pregnant with her first child. She is a student and part-time proof reader and copyrighter. Ethnic Background: White British.

More about me...

Fiona was diagnosed with asthma at age 11. However, she had no problems with it until she was 18 years old, then had a really bad attack and “it never really sort of recovered.” She was diagnosed with type I diabetes at 13. She used to have 4 insulin injections a day; now she has 5 as she is pregnant and stricter control is necessary. She was diagnosed with epilepsy two years ago and has absence seizures. Her seizures are successfully controlled with medicines. She does not see her health conditions as related. Her understanding of her epilepsy is that she was “basically born with it.”

Fiona sees her diabetes care as being especially good. It is more difficult to get neurology appointments. Fiona feels that GPs listen to her but she has no control over which one she sees. She feels that mental health issues can get lost within a focus on single conditions and criticises the disease-specific organisation of the medical system:

“I think they focus on the individual conditions, really. I mean when I was diagnosed with the epilepsy, it would be sort of, I used to be the go-between until I suggested myself that my consultant and my neurologist actually wrote letters to each other.”

Fiona has felt depressed because of her diabetes and thinks she should have been offered more in the way of emotional support because she is living with three conditions.

When Fiona was first diagnosed with epilepsy she confused the side effects of the medicines prescribed with symptoms of her diabetes. It is no longer an issue now that her body has got used to the medicines.

Okay and do you find at all that what you need to do for one of your conditions makes it harder to care for any of the others?

Not really. I mean I think, when I was first diagnosed with the epilepsy, there were times where I got confused because when you first take the tablets, you’ve sort of got, you know, like odd dizzy spells and I used to get that confused with my diabetes.

Right.

Low blood sugar and.

Right.

That used to be sort of a bit of a pain, but now that sort of now that my body is used to that medication, it’s not really so much of an issue. But no, I don’t think any of them have really affected the others as far as I’m, from my point of view anyway.

Okay and which of your conditions do you feel that you get the most help with?

From the medical profession?

Yes, yes.

I’d say definitely the diabetes.

Right.

Fiona judges doctors according to whether they appear to listen to her or not. She thinks that the quality of care depends on who you see.

In terms of the care that you receive, how do you know whether you’re happy with it?

Oh, that is a difficult question.

[laughs]

I think that when you come out of an appointment, whether you feel all your questions have been answered and whether you come out feeling satisfied and happy knowing you’ve got answers or, you know, that all your questions have been answered, or you’ve been taken seriously about something or, you know, whether you come out feeling, you know, a bit of a waste of time.

Which I haven’t felt at the moment. 

Right. Okay and do you feel that healthcare professionals listen to you? Do you feel that they understand the effect, the impact of your conditions on you?

I think it depends on the individual really. I mean some sort of do, some do listen to you, some don’t, or if some sort of think that they know better, sometimes don’t understand, you know, they sometimes forget that you’re the one living with the condition every day and you have more experience of it really. They may have more knowledge but you’re the one living with it.

And I’ve come across a few of those types of people throughout my time with regards to the diabetes.

And they’ve sort of made, I mean I had one doctor, who I mean this was talking about when I was about fifteen, and my diabetes couldn’t have had any more perfect control and he was talking about upping my injection count to seven or eight a day and, but that’s for no reason. And when you would ask why, it was sort of, you know, she didn’t quite understand and at sort of fifteen as well, to be told, you want to go, you know, you’re going from four to about seven, you know, you think, whoa.

Do you think that multiple conditions are an issue in in healthcare?

Oh. I think from my personal experience, I haven’t really found an issue but I think it depends on who you speak to and the kind of care they receive from different, obviously, you’ve got different healthcare professionals and I think it depends on who you see really.

When she became pregnant, Fiona had help from a diabetic team immediately. However, it took 4 months to get an appointment with a neurologist about her epilepsy.

Okay and which of your conditions do you feel that you get the most help with?

From the medical profession?

Yes, yes.

I’d say definitely the diabetes.

Right.

I mean I mean a classic example is when I found out I was pregnant, I told my diabetic team, I was, had a hospital appointment to, literally the next day.

Right.

Pregnancy clinic, the next, you know, straight in the next week and I’ve been there and I go every two weeks now. And the epilepsy side, unfortunately, it’s taken up until being four months pregnant to even get an appointment to speak to someone, unfortunately, because the, I know the neurological services are so stretched in this country that that’s, it’s, yeah, definitely say definitely the diabetes side.

Okay and is that as you would like it? Is that the right thing for you to get the most help with, is that as you would like, or would you prefer more help with other things or?

I’d say that’s definitely the right one to get the help with because I think that’s the one that could most affect the pregnancy and regards to the health of the baby, that’s the biggest fact, biggest one that can affect it, because we did check the meds. Because some epilepsy medication can affect the development of the child and can cause deformities.

Right. Right.

But the one I’m on is what is probably the safest one to be on.

Right. 

So I’m sort of lucky in that respect but I mean, I think it’s just been difficult because I’ve had so many questions I want to ask and they’ve been building up over months, and not being able to find anyone who can answer them. But yeah, I have an appointment now for next Wednesday so, hopefully, now I can get into sort of their pregnancy clinic and start being, you know, they can keep an eye on me as well.

Right.

With that, and so they and the diabetes team can start working together now.

Right. Okay so they are, do they talk to each other?

Yeah, they talk to each other and I know, when I was trying to get hold, trying to get into the epilepsy pregnancy clinic, my diabetic consultant was sort of very active in that and sort of writing letters to the neurology department and trying to get me in there ASAP.

Fiona doesn’t feel she needs counselling right now as she has a supportive family. Ideally, she would like to meet other people face-to-face who have both diabetes and epilepsy.

but I mean there had never really been any sort of offer of counselling really. I mean the services, they say the services are so stretched it’s more sort of if you want counselling, you’ve got to go out and find it yourself really.

Right. Right.

I mean I’ve been lucky. I’ve got a very supportive family and a very supportive husband so I don’t feel that I’ve had to go out and seek counselling at the moment.

My husband has epilepsy as well.

Right. Right.

So it sort of hit me because I’ve seen how, because he, his is worse than mine, and I’ve seen how bad it can get and it sort of things, how am I going to cope with trying to control diabetes and trying to control epilepsy as well? I mean I’m lucky. I’ve managed to sort of deal with it in my stride really and I have a really great support system from my husband and from my family, but some people don’t have that and there needs to be more emotional support, even if it’s sort of online, you know, a local online thing where you can talk to people locally.

And be able to arrange meet-ups because, you know, I’ve, I mean I’ve spoken, most I sort of speak to people online but I mean I’ve yet to sort of meet someone with both diabetes and epilepsy really.

So I can meet someone who understands one condition but not the other and it sort of, it can get quite lonely at times and I think there definitely needs to be more emotional support.

When Fiona attended her GP with depression it was suggested at first that she take anti-depressants. The GP listened when she said she didn’t want them and did not prescribe them.

I have a good input. Yeah, I mean I went along for a sort of a couple of, I think it was last year I started feeling a bit, sort of quite depressed so I did.

Right.

So I did go along to get it sort of checked over, and I know the immediate reaction was sort of put straight onto antidepressants. And when I said I didn’t, I wasn’t comfortable with going on them and I wasn’t happy being on them, then they did listen and they didn’t try and force it on me. They just said the option is there if I did change my mind, and I feel I feel that whenever I do go along, whichever GP I see, they do listen to me.

When Fiona was diagnosed with diabetes as a teenager the doctor advised her: “You control the diabetes. It does not control you.” Effective drugs and open communication with doctors can help find control.

Would you have any messages for other people living with multiple conditions? So that might be with the conditions that you have or with other combinations.

I think firstly, I’d say to them, it’s not the end of the world really. I think it can feel like it, and especially if you’re young when you’re diagnosed with diabetes, you just think, you know, the world’s ended, everything has changed, everyone is going to look at you different. And it’s sort of, you feel like it’s going to end but it’s not going to end and people aren’t going to look at you differently and if they do, you just ignore them really because they’re not worth your time.

Okay. Great.

Yeah, and, you know, there might be roadblocks on your way but, I mean I was given a great piece of advice from my paediatrician, when I was diagnosed, and it was you control the diabetes. It does not control you.

That’d be what I’d say to someone with diabetes. I think again, with the epilepsy, it’s, you know, you control it. If you can get onto the right medication and keep open communication with your neurologist, then it can be very well controlled and you can go on and be very successful and you can, you know, eventually get, you know, your driver’s licence back if you have to give it up for a year.