Michelle - Interview 51

Age at interview: 25

Age at diagnosis: 13

Brief Outline:

Michelle is currently on anti-TNF treatment' Humira. She has taken Methotrexate for a number of years but has had breaks in between following a biopsy that revealed liver scarring. Michelle was diagnosed with osteopenia (a milder form of osteoporosis) in her spine and needs to take calcium tablets regularly.

Background:

Michelle is a university graduate and works in the field of education at university level. She is planning to move to France and to work either teaching English or doing graduate studies. Ethnic background: White British.

More about me...

Michelle has lived with rheumatoid arthritis for almost half of her life time and has experienced a number of different treatments. Currently she is on 20 milligram Methotrexate injections, once a week and on anti-TNF treatment' Humira. Previously she was on another anti-TNF drug' Enbrel. She has taken Methotrexate for a number of years but has had breaks in between following a biopsy that revealed liver scarring. Michelle has also being diagnosed with osteopenia (a milder form of osteoporosis) in her spine and needs to take calcium tablets regularly.

In her teens years Michelle missed a lot of schooling because she spent long periods in hospital having treatments. She describes her teenage years has a 'tough time' because she was not only coping with her condition and the side effects of medication but also with feelings isolated from her peer group. Michelle saw a psychologist who helped her to think more positively about herself. Michelle advises other young people who find it difficult to cope with rheumatoid arthritis to get professional advice and support.

Michelle has done very well educationally and her self esteem has significantly improved since her teen years. She went to university and completed a degree in Hotel and Tourism Management and now has a full-time job which requires her to travel around the country giving public presentations. 

Michelle is determined to do as much as she can and her next project is to go and live in France where she will either teach English or do a graduate degree. She has already informed herself about the French medical system and says that her main worry was the cost of the anti-TNF treatment but a French doctor has told her that it will be free of charge because she is a European Union citizen and has a chronic condition. 

Michelle said that when she was a teenager family relationships were affected by her condition. Michelle says that her sister grew up thinking that she was her mother's favourite. Nowadays her sister gets along well with Michelle and their mother. Michelle has received much support and encouragement from her parents and her friends but says that her parents are her first port of call if she is feeling down or has a problem. 

When applying for jobs she lets them know that she is disabled. She thinks that nowadays if you meet the job criteria employers have to offer you an interview.

Yes. It's difficult because the feeling is that when you're ticking that box, you know, 'Is this the kiss of death here?'  Am I kind of guaranteeing that I'm not going to get an interview? Are they going to look at it and think, 'Oh, well, she's disabled. She can't do the job'?' Which is completely wrong. It's, it's the other way round actually. Normally employers nowadays, if you tick the disabled box, saying, 'Yes, I have a disability' and you meet the minimum requirements for the post, they have to give you an interview. That's normally the case.

And I applied for a job at [name] University in London as an international recruitment officer. And in the real world really I've got nowhere near enough experience and I thought, 'Hang on, have I got an interview? you know. I meet the minimum requirements but all the other kind of add-ons, not, the desirable criteria, not really.' And I had ticked the, 'Yes, I'm disabled' box. So I thought with that one, 'Well, I think I've just been given an interview because I meet the, the minimum requirements, and I don't think I've really got any chance of actually getting the job.' So I didn't bother going to the interview. Which I don't know if it was a mistake, but I didn't really want to just go to an interview just because I'm meeting their criteria, their target of, of interviewing people who have disabilities because they have to. So that's a tough one. And I don't know, it depends how much I want the job as well. So if I really really wanted a job, I would tick the disabled box and say, 'Yes, I've got a disability.' And then if I got an interview I'd definitely go for the interview, because I wouldn't want to take the risk. Because sometimes if you don't, I think if you don't tick the disabled box, then it comes up at, at a later date that you do have a disability, you can, you can get in trouble. They can say, 'Well, no, you didn't tell us at the time. We can't offer you the job. We needed to make adjustments for this post. And because we weren't aware of it then, you know, you've kind of lied to us.' So it is tough. But if it's, I will say if it's a job that someone really wants, then they need to declare it. It's best to be straight upfront from the start.
 

Talks about going to live in France, her concerns regarding medical care and the information she was given at a Social Security office and by a French doctor.

You're going to France, you said you're going to live there?

Yes.

What are you going to do there?

Well, one of two things. I'll either be a language assistant, so assisting with teaching English in schools, which is a scheme through the British Council, or I'll do a diploma in French studies at a university.

So where are you going?

Toulouse.

Toulouse? Oh, nice weather.

Yes, yes, very nice. That's what I found, I went there for a month in August to do a French course and I absolutely loved it. I could cycle everywhere.

You were cycling?

It was great. Yes, yes. Because it was hot as well, it was lovely. I just felt, I just felt like a different person because I just, could just go round on this bike and it, it was just lovely, really nice.

And what about the pain? Was it the same?

It wasn't as bad [laugh].

No?

No.

So maybe you need -

Hot weather

Hot weather.

I'm a bit concerned about healthcare and all that kind of thing down there, and worried about funding. Will I get my medication? So while I was over there I went to see Social Security and they were telling me how it all works, how I transfer my Social Security. I went to see a French GP just to get some advice, because the way it works over there, sorry, this isn't too relevant.

Normally a British citizen, if they get medical treatment in a European country, another European country, they have to pay most of the health costs there and then, and then they can apply for a reimbursement from their home government and get 75, up to 75 per cent back. And then the other 25 per cent they have to cover themselves. So either they, they pay for it or claim it through medical insurance. But still if I did that, I think Humira costs around '12,000 a year, so I'd be paying '3,000 a year. And no insurance company would cover that. I know that because I've done the research. But if you've got a, an acute illness, if you've got quite a serious disease, then the French health system will, will pay 100 per cent for you if you're from within the EU. And that's why I went to see the GP, just to see if he thought that my illness was the kind of illness where you could get the 100 per cent free healthcare. And he said, 'Yes, just come back and see me and, and we can kind of sign you off as, as free. So' [laugh].
 

She will either teach English or study at university in France. Says that her big concern was about healthcare and while there on a visit she went to see someone at a Social Security office and also talked to a doctor.

You're going to France, you said you're going to live there?

Yes.

What are you going to do there?

Well, one of two things. I'll either be a language assistant, so assisting with teaching English in schools, which is a scheme through the British Council, or I'll do a diploma in French studies at a university.

So where are you going?

Toulouse.

Toulouse? Oh, nice weather.

Yes, yes, very nice. That's what I found, I went there for a month in August to do a French course and I absolutely loved it. I could cycle everywhere.

You were cycling?

It was great. Yes, yes. Because it was hot as well, it was lovely. I just felt, I just felt like a different person because I just, could just go round on this bike and it, it was just lovely, really nice.

And what about the pain? Was it the same?

It wasn't as bad [laugh].

No?

No.

So maybe you need -

Hot weather

Hot weather.

I'm a bit concerned about healthcare and all that kind of thing down there, and worried about funding. Will I get my medication? So while I was over there I went to see Social Security and they were telling me how it all works, how I transfer my Social Security. I went to see a French GP just to get some advice, because the way it works over there, sorry, this isn't too relevant.

Normally a British citizen, if they get medical treatment in a European country, another European country, they have to pay most of the health costs there and then, and then they can apply for a reimbursement from their home government and get 75, up to 75 per cent back. And then the other 25 per cent they have to cover themselves. So either they, they pay for it or claim it through medical insurance. But still if I did that, I think Humira costs around '12,000 a year, so I'd be paying '3,000 a year. And no insurance company would cover that. I know that because I've done the research. But if you've got a, an acute illness, if you've got quite a serious disease, then the French health system will, will pay 100 per cent for you if you're from within the EU. And that's why I went to see the GP, just to see if he thought that my illness was the kind of illness where you could get the 100 per cent free healthcare. And he said, 'Yes, just come back and see me and, and we can kind of sign you off as, as free. So' [laugh].
 

She explains that her anti-TNF drug is working well and that at present she prefers drug therapy to surgery because she is moving to France. Ankle damage is the result of years of inflammation.

I think Humira must be close to two years. And before that I was on Etanercept, and that was since 2003. And they kind of assessed me and found that wasn't really effective as it, as it should be. So they tried me on the Humira, which seems to be working, like it's controlling the disease in my joints at the moment. But the damage that's been done in my feet is from the inflammation that's kind of attacked the joint over the years. So that's, that's damage that's been done since sort of 13. All the inflammation is kind of eating away at the cartilage if you like. And now the, the bone in, the bone here is kind of rubbing against the bone in my foot, and that's what's causing so much pain and the reason why I need ankle fusion or ankle replacement.

[laugh] But my alternative to drug therapy is surgery. And I've been to see surgeons at the [hospital]. So I've seen [doctor], who deals with ankle replacement surgery and [doctor], who deals with ankle fusion surgery. And that was last year. And I, at the time I said, 'Look, no. Thank you for sort of informing me but I'm not at the stage where I really want to have surgery.' Because, you know, you get complications with surgery, don't you? And like ankle replacement, you risk amputation if you get an infection. And you might have to have it done every ten years. And like ankle fusion is good. It, it gets rid of the pain pretty much. But then you, you kind of have a permanent limp and that puts pressure on other joints. And I don't know, it's, it's not something I really want to go into at the moment. And I'm moving to France in August. So I wouldn't want to have surgery before I go there and get any complications and then have to put that off. Because my heart's completely set on doing that now. So'

And how are you feeling with Humira?

Yes. No side effects, not that I know of anyway. Yes, okay. Apart, as I say apart from really the damage that's already there from years gone by, it's, there's no sort of serious inflammation. My hands aren't boiling hot. No, it's pretty good.