Michelle

Age at interview: 25

Age at diagnosis: 13

Brief Outline:

Michelle is currently on anti-TNF treatment: Humira (adalimumab). 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/nationality: 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 (adalimumab). Previously she was on another anti-TNF drug' Enbrel (etanercept). 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. 

 

Michelle goes to an Anti-TNF clinic to have her medication assessed.

So you go and have an appointment for them to test your joints? What do they do when you go to that?

 

Anti-TNF clinic?

 

Anti-TNF clinic? Can you tell me what do they do?

 

It’s like a, a dash score. They have a chart and they kind of mark off on there, you know, which joints are inflamed. Then if you have a certain, they look at the score and if it’s above a certain number it’s showing that the medication you’re on is not effective. If it’s below, then it is effective. That’s kind of how it works. And I think they’ll, they’ll kind of monitor you over a period. And if, if those results from the tests are showing that your drug’s not effective, they’ll, either change it to another therapy, another anti-TNF therapy or take you off it altogether and put you on something completely different. And so I see sort of a registrar or a nurse or something to have the test done, and then probably see the Professor or a consultant just to talk in more detail about my joints, how they’ve been, what to do in the future kind of thing.

 

Michelle found ibuprofen to be 'quite an effective pain relief' but it caused a stomach ulcer and...

And ibuprofen, I have side effects from that. That’s, I find that quite an effective pain relief. And I had been taking ibuprofen slow release, 1600 milligrams per day. But then in January of this year I was getting really really bad stomach pains. And my GP rang me one day when I was at work and he said, “Are you all right?” I was like, “Yes.” “Well, your blood tests are showing that you’re not all right. You’re very very anaemic and you shouldn’t be in work. So I suggest you leave now and, and we’ll get you admitted to hospital, possibly for a blood transfusion.” So I went into hospital, but they, they kind of kept me in to do observations, took me off the brufen and put me on iron tablets, ferrous, not ferrous sulphate, ferrous fumarate. And that gradually kind of brought my blood count up. And they said, “Oh, you don’t need a blood transfusion now. Just stay off the brufen as much as you can, and take iron tablets.” 

 

So the ibuprofen sort of produces this anaemia?

 

The ibuprofen causes a stomach ulcer, which then bleeds. And then because I’m losing blood I’m getting anaemic.

 

What do you take for the ulcer? Lansoprazole?

 

What did they give me? Yes, I take lansoprazole, yes, again as and when. I’m getting very lazy with taking my medication. I think I’m invincible sometimes. And also Asacol, I’m meant to be taking that quite regularly. Is it, yes, I think it’s Asacol, that what it’s called. So many drug names.

 

Michelle always felt sick for several hours after taking methotrexate. She chose to take...

Does the methotrexate affect, sort of do you become sick with it?

 

Yes I do. The day after I always feel sick.

 

For how long?

 

Well, I’d say it starts sort of late morning. So I’ll get up, I’ll have my breakfast, and I’ll get to work and I’ll start feeling quite sick. That probably lasts sort of four or five hours, and it starts wearing off later in the day.

 

And you take that every day?

 

Methotrexate? No, that’s once a week.

 

And do you take it during the weekdays?

 

Generally on a Thursday. But again if I forget, I mean sometimes I’ll be out in the evening or I might be working away and I’ll forget about the methotrexate. So I might end up taking it on a Friday or Saturday.

 

Who decides for you to take it on a Thursday? The doctors or you?

 

Me.

 

So it’s your option?

 

I just think it’s best to feel sick on a Friday, because I’ve got the, the positive to outweigh it that it’s Friday. So if you take it on Monday, it’s like, “Oh, it’s Monday. And I’m feeling sick.” Whereas on Friday, it’s, “Yes, it’s Friday. Feeling a bit sick but it doesn’t matter.”

 

And you don’t –

 

That’s my logic.

 

You don’t like to take it at the weekend?

 

I don’t want to ruin my weekend. I’d rather be sat at work feeling a bit sick than, than have it at the weekend really.

 

Michelle declared her arthritis when applying for jobs. She felt that this would help her get an...

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 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, the, 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, their criteria, their target of, of interviewing people who have disabilities because they have to. So that, that’s, 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 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, it’s, 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.

Michelle's friends accept that she can have difficulties walking but her housemates don't seem to...

Just, I’m still a bit self-conscious, still lack confidence in some respects. And I know that arthritis gets in the way a bit if you like sometimes. Like if I’m going out with friends now and I need to get a taxi. Like we’ll be at one end of the road for example and need to get to the other, and I just can’t walk. So I’ll just say, “I can’t, I need to get a taxi. I’m sorry, you know, but I really can’t walk.” “Oh, that’s fine.” Depending on who I’m with, they’re just like, “Oh, yes, yes, that’s fine. We’re, we’re coming with you.” And, you know, generally people are quite accepting. But I’m still finding that even sort of adults and some of my housemates, they don’t really know how to, to handle it. Like I’m not sure, sometimes I’m not sure if they think, “Oh, it’s a bit weird. I want to keep away and keep my distance from, from talking about the arthritis.” Or maybe they don’t want to upset me. Maybe they don’t know, maybe they don’t know how to talk about it. I don’t really know, and I find that when my housemates are talking to me about it, it’s like walking on eggshells, they tread very carefully with their questioning. And I’m surprised they don’t talk about it more with me, because I’m always...

 

In a way they don’t want to upset you maybe?

 

Maybe. I don’t know. Because I’m seeing it from a very insular point of view. I’m not kind of seeing it from their point of view. Because it’s really hard for me to do that, being the one that’s got the arthritis. So I, I can’t kind of be outside the box looking in.

 

People like to have a choice about their treatment. They do not always like to be told what to do

It’s never really about lifestyle. It’s all very much the medical side of things. Specifically with Professor, who I personally find to be very rude. I mean I, I have requested not to see him actually. I don’t like his approach. I think his people skills are lacking. I mean he has upset me before with some of the things he’s said. He’s too blunt in his approach. And I think that’s, that’s not the characteristic of a doctor or someone that you should be seeing for, for medical help if you like. But it ends, it turns out I have seen him again obviously, with just like, “Michelle will see Professor [name] today.” So I think that’s lacking.

 

So it’s a problem of communication, of interaction?

 

Yes, yes. Sort of I guess he’s a bit patronising. So I think when my foot starts to get really bad, I have to say, “Well, what, what can we do? I’m in so much pain.” He’s like, “Well, we haven’t got a magic wand.” And, you know, he’s just really quite harsh about it. And it’s like, “I wasn’t saying that. I’m just wondering if there’s anything else that can be done without surgery.” You know, he’s very sort of sergeant-major in his responses. Kind of, “Yes, do this, we’ll do this, we’ll do this” and kind of talking to his team and telling them what’s going on rather than talking to me about it. 

 

I mean I’m not, I know we don’t sit down and have a chat about, “So how is your day? What did you do at the weekend?” I know that’s not how it works. But I have had rheumatologists in the past saying, “Oh, you know, how are you? And how are things at work?” And, and I think that kind of thing is really important because it builds up trust between the patient and the doctor. And I think that way as well the doctor can probably gauge how your health is. So if you say, “Oh, you know, work’s not great. I’m not coping. I’m struggling to get in in the morning” then that shows that you’re not so good in the mornings maybe and that your, your joints aren’t great, rather than just sort of, “Right, we’ll put you on this. We’ll do this to you and we’ll do this. See you in three months.” I don’t think that approach works at all. And, and that’s, that’s how Professor [name] seems to work and just sort of saying, “You, go and see [name], go and see him about surgery.” That’s, that’s not what I want to hear. But, you know, I’ve, I’ve told him I don’t want surgery. So I want him to say, “Okay, we’ll try you on this therapy” or, “How does this sound?” or, “This is coming up. You could try this at some point in the future.” You know, it’s, he kind of dictates what he thinks should happen rather than discussing it with you. And that’s a shame.