Rollo - Interview 11

Age at interview: 23

Age at diagnosis: 15

Brief Outline: Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.

Background: Rollo is a university student and has been living with ME/CFS since the age of fifteen. During term-time he lives in a shared household with other students but he regularly goes back home to see his parents. Ethnic background/nationality' White British.

More about me...

Rollo has been living with ME for the last eight years. It started when he was away at school. He thinks that what affected his immune system was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this, he started to have joint pains and became very emotional. He remembers that he cried a lot at the time. 

He was tested for several conditions like diabetes, glandular fever and leukaemia but they all proved negative. During that early period no one knew what was wrong with him. Rollo was diagnosed with ME by an 'alternative practitioner' a few years after getting ill. 

His parents encouraged him to continue with his education. He studied at home for his GCSE's and went back to school to take his A-levels. He is grateful to his parents for all their support and motivation. Although he found it difficult at times, he finished with good grades and was able to apply to the university of his choice

Says that doctor-patient relationship is difficult because doctors are used to treating your...

I went to see an ex GP who had become a remedial doctor and he diagnosed me with ME. I knew I had ME but I hadn't been officially told it. No doctor, no doctor until I went to see this doctor with a special interest, this guy that I did this course with next year. He was the first doctor to say that I had ME. That was seven years after getting it. 

I think doctors find it quite difficult because it is untreatable without wanting to be too negative. I mean it is treatable in the sense that you rest but doctors want to be able to give you a drug and they can't do that. I think they find that really difficult. I have had some interesting chats with medical students because they really want to learn more about it. Because you know, I think at least one person already knows at least one person who has got ME and it is getting more and more common I think and so people ought to know more about it. But it was difficult eight years ago, just because someone, a doctor telling to rest is not good enough really and I am not saying it is their fault because I understand the situation but it is not good enough just to say rest because that is not substantial enough.
 

When feeling ill he becomes emotional and tends to cry. His fellow students at his all male...

And it was an all boys' school and when you are crying all the time. Because when I am tired all I can do is cry because I am so tired and it is just completely beyond me and I don't know what to do. When you are crying all the time, you know people think you are very wet and it is not particularly conducive to, you know people don't understand and you can't blame them. But it wasn't - I was pleased to leave. And it was difficult. I mean it is difficult being ill at school although having said that the school were very understanding. My housemaster there, you know the teachers were very understanding and very helpful in that respect. They were excellent. But I worked really hard and got good A-levels because I knew that I wanted to get A-levels to be able to move, you know get out of school and not have, I have always been determined, and my family, my parents have always been determined that this is not going to ruin my life. And it has to a certain extent sometimes you have just got to say fine, just go and lie down and relax whatever for a week or month or whatever. But I was determined to get good A-levels to go to a good university because I have always been in the hope that I will get better and if I got better but didn't have any qualifications then you know you are on a losing battle when you get there.

Feels that things couldn't be better in terms of the support and help he's got from the...

From the university staff, when you are going through a bad patch and feel very fatigued?

They have been amazing about it as well. I just go to the doctor and ask for a letter saying I am feeling ill and I give that to my tutor so they have got it on record. It is really important so that if it was to come to any work that needed to be handed in and I hadn't been able to do it because I had been ill. If I have notified them before then they are prepared for it. And my university they have been brilliant, absolutely brilliant about it. I don't really see them that much because I only have three lectures a week or something. In fact they have been really good about it because very confusingly I had to retake half the year last year because I had been ill and missed it, but that wasn't a problem they got it sorted out. It was my tutor who suggest it to me that and I hadn't even thought about it because I thought for a second I would have to quit university and I didn't really want to do that. But they have been really understanding about it. 

And you know, there is a - in the Union there is this department called the Access Department which sorts out disabled students and so I went to see them in the first year and they got me a Disabled Students Allowance which helped out with various things as I mentioned before. And that has been really helpful as well. So that is ideal. I can't really fault them. They have been fine. It is just - I just at some points haven't been very well but they have done their best to accommodate that, but you know there are some things that they can't - they can't make me better but they can help as much as possible.

When you wrote your personal statement to come to university you said you wrote something about your condition or not?

I think I, yes I think I must have done. Again my memory fails me. But I think what I had wrote was that I had had ME for four years then, four years may be. I had it but I had got good GCSE results. I am going to get good A-level results. I had been predicted this, this and this, so although I am ill it hasn't you know it won't affect me academically because I am sure I told them' I am quite positive I told them because I didn't want to not tell them because that would be a bit dishonest but I wanted to show them that it didn't affect me, it did affect me but I would be able to achieve to their academic standards because I had got these good A-levels and I had got good GCSEs. I think also it shows a good determination, and a good strength of character to be able to be ill with something that is pretty debilitating but also be able to do exams and to want to come to university and stuff. And I wasn't a problem. Yes.

He talks to his other friends with ME about how he feels but he doesn't want to focus too much on his illness.

I have a couple of friends, one friend, two friends, two friends, who would like to speak to you about it that have got ME, and we just sort of chat. What is interesting with that sometimes we just divulge into talking about how ill we are and it just sort of goes. You know the conversation gets a bit limited and I kind of like to think that I don't want to be boring and just talk about being ill. I like to think there is a bit more to me than that. So that is why I don't go to a support group. But I have a couple of friends that have ME and you know it is nice to have bit of solidarity with that. But, don't really talk about it, well we talk about it a bit and we support. But it is mainly about just talking and knowing that you can talk about other stuff as well.

Did you make those friends at University?

I met one of them at university and one through a friend who said that I should phone this girl up, [name], and I just phoned her up [laughs] and we became best friends just like that. So that was really nice.

That was before university?

That was when I was at school which was really great so I could speak to her when I was at school, because that is when it was really helpful. Was to be able to talk to her when I was school when I first' because I was really ill at school and I found it difficult and I could go to hers for lunch sometimes and that was really helpful that was a bit of a break, and someone who was understanding. It was nice.

But you other friends you don't sort of like to talk to them?

Not really. I don't want to be rude, so I don't want to be kind of really offish with them and them thinking they have done something wrong. Then I explain I am a bit tired. But we are not going to all sit round and say so my legs hurt today and this hurts today and do you know I really feel crap [laughs]. I am really not going to do that. But I let my friends know when I am feeling ill and stuff because they need to know and church I let them know when I am really ill so that they can pray for that and that sort of thing. Yes I talk a bit about it. But I talk in depth to my mother about it and leave it at that really. Because it is a bit boring. I am not sure I really want to know about how ill my friends are if they are ill, you know, so [laughs] so I think I just sort of keep it to myself a bit more to save my friends from the boredom of it.
 

Both his parents have given him so much love and support it has made it much easier for him to...

What has helped?

Well my parents and my family. I mean I am very thankful for my parents and my family for the love that is there and the support and the care that we all have for one another. And my parents have been just amazing to me over the last eight years. And that has been the saving thing because without wanting to be too melodramatic you know one thinks of committing suicide, I have thought of that a few times, but my parents are so wonderful to me. And obviously I can never do that because my parents love me so much and yes my parents love me so much. And when you get out of that cycle and then you start feeling a bit better then you realise of course you don't want to commit suicide. Of course life is good and stuff. But just sometimes I think the point is that sometimes it feels so all-encompassing and so difficult that  it is just difficult and you just want to try and find another way out of it.

The first thing that I remember. I think it is almost to the day eight years ago when my mother came to pick me up and I remember [laughs], I remember she came to pick me up, and she was driving back because it was in London and we live in [city] and she was driving back down the motorway and I was sort of in the passenger seat, I had put it all the way down and was lying there and staring at her and I remember her looking so worried, but loving me so much and just saying that we were going to get it sorted out and stuff and I wouldn't have been able to do anything without them. Because nobody didn't know what was wrong. But they were determined you know to find out. And we would look into it and stuff and we went to all these different doctors and they spent lots of money on these alternative remedies and stuff, none of which worked, but it we still persevered with it.

My father has been amazing. I don't go to an ME support group because I find them, I find it quite difficult but he has always gone and he has always been very support of it. And you know they say they are proud of me and they are supportive and that really does make the world of difference. Because it is incredibly difficult and you don't now what on earth is going on and you need help and support and you know to have them give me the help and support has made such a difference because you can't do it on your own. Especially when you are, especially when you are 15 and you don't really know what is going on at the best of times. You know. You have so many other things on your mind and you are trying to deal with stuff. But then when you parents are there and they are being really helpful that is amazing and fine - it would have been complicated if they hadn't been there. It would have been less likely that I would be here if my parents wouldn't have been there for me. 

ME affected his confidence particularly when he was a teenager. Says that when he is well he...

Does ME affect relationships?

Well I mean. Yes it does. It is a difficult one because I am not really sure whether it was ME or whether it was just me but I have had, I think it was an ME, it was just an extraordinary time. Having ME during your teenage years is unbelievably complicated. I mean being a teenager is a complicated thing with all these funny juices pumping around your body and you know you first discover girls and you are thinking well and all that sort of stuff and then being very tired and thus being quite depressed and not that confident in yourself or really not confident in yourself at all  because you are depressed and tired. It just compounds the issue and I had some crazy times. 'ME indirectly I suppose has affected my confidence like that, because as I say, you know it brings you down and it makes you more depressed. It makes you less able to do stuff that other people can do and stuff and if you go to a party you spend a bit of time sitting down when everybody else is dancing and all this sort of stuff. It comes to 12 o'clock and I am ready to go to bed you know and there is all this sort of stuff. It does, it affects the person that you think you are, I think. 

But also I would say that it affects the person you think you are but it doesn't affect the person. You just have to, that doesn't really make sense, what I mean is it affects who you think you are but it doesn't change who you are, it just changes who you think you are. So when you are feeling ill then it is just not a good time to start looking for a relationship but having said that it doesn't really work like that. When you start feeling ill you start to think well why didn't I have a girlfriend, why didn't I have this or you know but then when you are not feeling quite so well, well this is for me personally, when I am feeling so well I am more positive and I think it will come around and it does and stuff. And now I have to a situation where I am very happy with the situation I am in and I am sort of and waiting and hoping that I will get a girlfriend but now I am not that fussed about it. I am a bit more, I am more confident with the person I am. But let's say if I had a relapse, a major relapse and felt really ill then I am sure it would become an issue again [laughs]. Because I kept a diary for quite a long time over the time that I was ill and it was all about you know problems with relationships. Well problems with girls that I liked and not being able to tell them and I am sure that is the same for every teenaged boy but I sometimes just felt it was more for me, because I used to get very emotional and most blokes I think would sort of shrug it off a lot better than I could and I think that has got something to do with being ill. I think that does definitely have something to do with being ill yes.

Doctors should know more about ME because that is the first person you go to when you are ill....

Doctors should know more about it because if there is a situation where you are suddenly horrendously ill and you have no idea what is going on the first person you go and see is the doctor. That is the first person I went to see and that makes sense, that the first person you go and see is the doctor and so the doctor should know more about it and if they don't they should at least be able to suggest one that should. Like I went to see this GP with a special interest in ME who was a brilliant doctor and he knows a lot about the illness so perhaps they should ' people that are suspected of having ME after they have done tests for glandular fever and all the rest of it and nothing shows up, because there is nothing to show up for ME. Then if they don't feel confident enough to be able to deal with it themselves then they should send someone on, the patient on to someone who does know about it. Because it is unacceptable just to send children off or anybody off without giving them satisfactory medical advice about it. And I know it is difficult and I know there aren't any fool proof answers but graded' resting and pacing yourself sounds almost a bit like a clich' but I think that is the thing and I think some doctors do say that and I am being a bit harsh on doctors but it think they need they need to be a little bit more understanding about the situation because every case of ME seems to be a little bit different. Because tiredness affects peoples bodies in different way and doctors panic at that because they want to try and treat everybody the same way and I think they have to try and be a bit more flexible. I don't know, may be that is just educating doctors better on it, or if they are not capable of then sending the people off to somebody else, then talk to them about it more. Because they do need to know about it more. Because it is such a daunting prospect. You are suddenly horrendously ill and no one knows what is wrong with you, it must be ' it is the worst thing. I mean you need help and you go to the doctors and they need to help you. I think.