Voices of Youth
When you think of someone with ME/CFS, you may picture a woman in her thirties or forties. Yet people of all ages have ME/CFS, even young children. Here we will collect stories written by children and teens suffering from this devestating disease. In their own voices you will hear how ME/CFS has turned their lives upside-down, but you will also hear the hope they carry in their young hearts.If you are a youth (up to age 26) with ME/CFS in the UK, you can join the Association of Young People with M.E. (AYME) at http://www.ayme.org.uk The functional ability scale referred to in the following stories can be found on AYME's website: http://www.ayme.org.uk/article.php?sid=10&id=11
Alysha Tatum: My Experience with M.E.
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Alysha
very active when well
Alysha
with her sister. |
Hi,
My
Name's Alysha Tatum and I’m 12 years old. I have had ME/CFS for 2 years
now. I’m from Southampton [U.K.]. My hobbies before I got ill were
hanging out with my friends, having sleepovers, going to the forest,
dancing & doing gymnastics. Now I have become ill I cannot do most of those things anymore. So I like to go to the forest sometimes in my wheelchair, and playing/walking with my dog Maggie. We got Maggie because of my ME/CFS. My mum said it could help, and it did at first, I was around 20% but when I got Maggie I went up to 30% and I started to recover. I was going to school again, part-time and seeing my friends again but I over-did it in school and because they didn’t believe me or support me, I had another relapse. So now I am down to 30% again sadly. I have just got over being semi-bed-bound and attacks from the illness, but I'm slowly starting to recover again. My doctors aren’t very good at all, they think I`m faking so the only person who supports me and helps me is my mum. My dad isn’t much help; he also thinks I’m faking. My older brother, Clive who is 18, he helps me. My dad isn’t much help; he also thinks I’m faking. My older brother, Clive who is 18, he helps me. When I had the relapse and I couldn’t use the stairs, he carried me. He helped me borrow my wheelchair. The doctors did not provide me with a wheelchair, so he asked one of his teachers and he borrowed it from her. My older sister Lara who is 15 doesn’t really help, she takes after my dad, so the people who support me would have to
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| be my
mum and brother. None of my school
friends support me; they all ditched me so I don’t really have anything
else to do with them anymore. I'm not at school at the moment, but I’m
having online learning called 'E-Learning' - it’s an online classroom.
I have only just started within the past month. I haven’t properly thought of what job I would like yet but I wouldn’t mind being a gymnastic teacher, teaching children and either working full-time or part-time helping/saving animals. I have also wanted to open an animal rescue centre, and help all the homeless and injured animals. |
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Jasmine Long
 |
Hello,
my name's
Jasmine Long. I’m 11 years old, I live in West Sussex [UK] and I suffer
from
ME. I was diagnosed in January 2009 at the Princess Alex Hospital. Since I fell ill originally in September 2008 my life has turned upside-down, inside-out & now my world is completely different. Whilst I was well, I danced at least 2 hours a week, I was on the athletics team, played
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football at an after school club, did various activities
at
the local leisure centre, I would go shopping downtown on
Saturdays and
always be at my church on a Sunday! As you can imagine I was a very
busy person, all that has changed now as I am lucky if I can go out to
the local supermarket once a week. But I have new hobbies I can do
without using too much energy such as: writing poetry; making cards and
baking cakes. All of these I never had time or enjoyed before! |
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Emma Bartley
Emma
when she was well |
Hi,
my name is Emma Bartley and I am 12 years old, I live In Northern
Ireland. I have been ill since December 4th 2008, but was only
diagnosed with CFS/ME on March 5th 2009. On the scale I think I am
between 20-30% On December 4th 2008 I woke up one morning with a really sore throat. I took some medicine and went to school and when I got home from school I felt really ill, so I just went to bed. After two weeks I still wasn’t better and went to the G.P.; he did some blood tests and because two of the results were not clear he wanted them repeated in two weeks, so in January I went back. The G.P was sure that I had Post Viral Fatigue Syndrome but he wanted me referred to the hospital to get a proper diagnosis (at the end of December 2007 I had caught a really dreadful flu and vomiting bug, it lasted for a few weeks and right through 2008 I didn’t feel myself.) So I went into hospital at the start of March and had to stay for two nights. The consultant thought that my muscles had just gotten weak, since I hadn’t been doing very much since December, but the truth was I was so ill that I couldn’t do anything. By this stage I could hardly walk or keep my head up, I wasn’t able to sleep, and my bones and muscles ached continually. The consultant wanted a Physiotherapist to come and work with me to get my muscles working and to get me walking again. My time in hospital was really horrible because I felt that no one listened to me and it was as if the doctors thought that I was faking and just being lazy. The day that I was due to leave the hospital, the Physiotherapist came down and said that he was taking me to the gym for a 30-45
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Emma with
ME/CFS |
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| minute workout. I
couldn’t believe that he was
doing this, I could hardly walk and I felt so ill and yet they
kept
telling me to get up and to keep moving. My mum challenged the
Physiotherapist and he just said “well her blood tests have come back
clear, there’s no reason why she shouldn’t be able to do it!” We went down to the gym and he said I was to go on the exercise bike, cross-trainer and a mini-trampoline. My mum felt very angry by now, and it was obvious to everybody except the medical people that I wasn’t fit to do it. I went on the exercise bike for five minutes during which time he kept telling me to go faster and faster. I came off it and felt ready to collapse, and I burst into tears. My mum stood up and told him that, that was enough and that I wasn’t well enough and that nobody had taken it seriously. I was discharged later that evening and I have been unable to walk since. I felt that the people who were supposed to help me had made me feel worse and that they hadn’t believed me or listened to me. I was always a very energetic person, always doing things and planning activities, but with M.E. it’s totally changed everything. I need help with absolutely everything, I haven’t been to school since the 4th December and I’m not ready for home tuition. When I was well, I loved to play all kinds of sports, being with my friends and family, going to youth clubs and so much more. All that has stopped; I can’t do those things anymore. Since I have been ill I have found new interests like using the computer and card-making. In the future I would love to work with animals, as I love them. My family and friends have been great, I keep in touch with my friends, they sometimes come and visit me but sometimes I feel too tired. |
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Samuel King: the Good, the Bad, and the M.E.
Name:
Samuel King
Age:17
Location:
Herts
got ME
in Jan 2004, diagnosed three months later
supported
by: Family
Before January 2004 I was just any old kid, playing football, laughing
with friends, and doing my best to avoid any schoolwork that
might occasionally interfere with my childhood bliss. I'd just moved to
a new school (a middle school years 5-8) and I was in year 7, so I
hadn't had the chance make any strong friendships. The only real
difference between me and other kids was that I'd developed a chronic
fear of academic failure, because of the success of my elder sister,
meaning that I usually freaked out in exams, and often did rather
badly. I think my overwhelming desire to emulate my sister and go to
Cambridge (which is now unfortunately impossible) is now the only thing
that I share in common with the 2004 version of me. It was the Thursday the 27th of January 2004 and I told my mum that I felt ill, just another virus it appeared, a week of school in bed and back to school on Friday. I felt a heavy tiredness pulling at me all day, my muscles were leaden, my concentration had disappeared, everything was a dark misty blur. The last lesson was PE, I can't remember anything that happened except being picked up from school after I'd fainted.
I spent the next six months in bed unable to think coherently or move, it took me 3 minutes to walk up the stairs. During this period I began a very strong relationship with my bed, and it certainly has the asset of being a good listener, and not answering back. I'd lost contact with the people from my earlier school and as I was new I didn't have any real friends, so I was up against ME on my own. "On my own" was to become a rather frequent experience, but the fun didn't start till I went back to school. After six months I felt well enough to have another go at school, just a 50 minute lesson to start off with. Firstly after the 20 minute journey I was exhausted, then my life started to explode.
ME had marked me out as different, the kids couldn't understand the concept of it and I was fair game for some of them, getting through those lessons was hard enough without bullying. At the time, I was stunned by the insults, as I'd always been very privileged and had never seen or experienced bullying. Looking back on the stuff I got, it was relatively mild, but going through it was so painful, the thing that hurt me most was being laughed at, I suppose it hurt my pride. It left me feeling broken and humiliated. It didn't get better when I got home, because I had to rest, and when I did I went over the insults which waltzed around my head again and again and again and again. Each time I went over it in my head I was just compounding its effect. This went on for the next six months, the hardest thing about it was getting up and knowing that you're going into school exhausted, and that when you get there you're going to get bullied, I found it really hard forcing myself to repeatedly put myself in the firing line. The scars still remain, even writing about it 4 ½ years later it's still emotional.
When I moved into year 8 I was saved by my new form tutor, who stopped the bullying, and then systematically proceeded to give me the best year of my life, by manipulating the students behind my back. It's only recently when I've looked back upon it that I've realised what she did for me. Firstly, she told one of the boys who was both popular and sensible to look after me and make sure that I was alright. Then I suddenly became remarkably popular with the other kids, and added to that I immediately became brilliant at football, I was easily the best in year, and when my PE teacher saw me play he said that I could well have a professional career as a footballer. At the root of this was confidence, which looking back on it I see was all down to my teacher. I remember the slight smile on her face when I came into school and she saw all the kids flock towards me. Added to which all of a sudden the kids had developed a detailed knowledge of ME and how hard it was to deal with it. She had obviously been educating them about ME, and ordering them to be nice to me. A typical example of this was at the end of the year when I came in to collect my leavers book, and everyone wanted me to sign their's, and they were going out of their way to be nice to me, and again there was the same hidden smile on my teacher's face. Reflecting on my time there, I'm amazed that it took me about four years to work out what she'd done for me, I owe her the best year of my life.
After year 8 I decided to move to a boys' school that had an excellent reputation and had exceptional sporting results with very good academic results. My time experiencing bullying at my former school couldn't have prepared me for what I encountered at my new school. It started of with a boy having the same name as mine, who took an immediate dislike to me. He also seemed to feel that having someone with the same name in the school significantly harmed his street cred ratings. He then began his campaign to get me out of the school. The fact that I had ME was one of the main things that I was viciously attacked for. It got even worse when I got diabetes, as it gave him another piece of ammunition . He proceeded to tell his friendship group ( about half the year) a load of stuff about me, most of which is unrepeatable, the milder stuff that I got called was basically saying that I was a weirdo ( of course it was embroidered by their own imaginative colourful tongues). I was also initially put in the lowest sets as no records of my academic achievements had been sent on to my new school, meaning I was in an environment suited to bullying. The situation wasn't improved by the fact that it's a community school (I wasn't part of the community) which meant that all the boys he told told their brothers or brothers' of their friends and so on, meaning that I was now the school verbal punch bag. The main difference between this school and my previous one was that these were hard-core bullies who new what they were doing, at my previous school it had been amateurish, now I was against people who used their brains to avoid detection, and to make sure that I told no one. I wasn't the only one getting the treatment, I saw other boys get bullied out of the school in my time, bullying was endemic, as the boys competed to prove how hard they were. The teachers had no chance of detecting or dealing with the bullying unless the victims told them about it. Take the example of my head-of-year who did a lot to help me in other ways while I was there. He was the head of Geography and the head of a year, as well as being responsible for the Duke of Edinburgh awards, he had no chance to observe and notice what was going on.
The pain was unbearable for a 14 year old to deal with and I ended up being extraordinarily depressed , confused, and often I thought of suicide. I looked for an answer for the bullying and concluded that it was because I was weak, I then fell into a cycle of self-pity and hate for them and me, that led onto depression. I was reduced to a social wreck unable to trust people I didn't know, I just looked down at the ground, cramped my muscles up and stuttered.
I told all this to my paediatrician who arranged for me to meet a psychotherapist, who slowly managed to bring my head out of the mess. This was in year 11 after 2½ of constant bullying, I think that the kid who started the bullying finally gave up, and ended up respecting me for not giving in to him. I still get loads of comments now even though I'm in the lower sixth from people in lower years, the ones in my year who'd bullied left, and I've still got my reputation as a weirdo, I still walk down corridors and watch as one boy tells the one standing next to him "you see him, yeah him, he's a f****** p****" even though he's never spoken to me or knows nothing about me.
Through getting in for about 20-60% of school (depending on the subject) I managed to get 4A's, 3B's and 2 C's. I'm now doing Eng Lit, Biology, and History (although I'm changing Biology to Music for next year as dealing with all the facts in lessons usually leaves me exhausted and I either have to come out of the lesson and go home and sleep or go home after the lesson.)
I now hope to be a professional blues/jazz/rock pianist and vocalist, all though my ideal dream would be to study either History or Eng Lit at Cambridge (being there with my sister always re-confirms my faith in human nature), unfortunately my health means that that's a forlorn dream. The second lot of bullying destroyed my confidence and as a result my footballing ability quickly disappeared.
In this article I was [asked] to discuss people's attitudes towards people with ME, this however meant that I was unable to talk about my Music or much about me, my likes and dislikes, all of which were affected in a very way by bullying and ME. I hope this article enforces the need to educate people about ME, if people knew more about it, I am convinced that I wouldn't have bullied, certainly not to the extent that I was.
Ellie
It started when I got Gastritis and Pneumonia in May and June 2008, and I had to stay in hospital for 3 days. The doctors said it could take 4 – 6 months for me to recover, but in October, I was getting worse, not better. I was referred to a consultant, who did lots of blood tests, and 3 MRI scans. After he couldn’t find anything, he diagnosed me with M.E.
When I was diagnosed, I was scared, angry, and upset. I was scared because I had only heard about M.E because my dad had it for 8 years when I was younger, and I didn’t want to be ill for 8 years, or sleeping for 23 hours of the day. I was angry because I wanted to know “why me?” and I was scared because I didn’t want to be ill with something that there wasn’t a cure for.
When I was first diagnosed, I was about 50% on the ability scale, but I have decreased to around 20-30% now. I do not attend school, but get home-tutored instead, when I feel well enough. Because I am not going to school, I am losing contact with my friends. They do not know what M.E is, and do not understand, and it feels like they don’t care. I am in contact with only 3 of my school friends now, which makes me feel horrible, as I thought I had lots of true friends before I got ill.
When I was diagnosed with M.E, I thought I was all alone. But I found out about AYME, and have become a member, where I have made new friends, and even new best friends, even though some live in Northern Ireland!
Before I got M.E, I was very active. I didn’t like much sport, but I liked music, drama, cooking, and all sorts of things. Now, I do not go to school, I cannot go to clubs, I cannot play my saxophone, because it drains me of all my energy, I don’t bake as much because I never have the energy or I feel too sick, but now I like to do other things, like crafts and going on the computer, as they keep me distracted, and I can keep in touch with my new friends.
My parents and family have been supportive, understanding, and great. I am very grateful to have them. My tutors are very supportive too. If I haven’t done my homework because I was too ill, or if I don’t feel well enough for a whole lesson, they are very understanding.
When I am older, I am not sure what I want to do, but I want to raise awareness of M.E., as it should be recognised and researched.
Life has changed dramatically because of M.E, but not all for bad. I have made life-long friendships with people from AYME, I have found out more about the mystery illness my dad had, I have discovered who my friends really are, and I know how badly my sister can push a wheelchair!
Check back soon for more
inspiring and heart-breaking stories from young people with ME/CFS.
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