My invisible illness (M.E.) – Corrine

My invisible illness (M.E.) – Corrine

My childhood was difficult as I was always ill. I had a lot of time off school, as I caught every bug going, and my father constantly criticized me for this. Consequently I had little confidence in myself.

I first noticed I was “different” when I was in junior school. My friends could run and play during breaks while all I could do was stand, watch & chat. I couldn’t describe it then but now I know I didn’t have the energy to play, my legs ached, I got out of breath quickly, I felt unwell, my brain was foggy I couldn’t think properly I got behind in lessons as I couldn’t concentrate.  I always felt like a “reject” not good enough, but this was my dirty little secret. I never confided in anyone.

I don’t have many happy memories about growing up. The only ones I have are my auntie and granddad showing me kindness and understanding. I later learnt these two qualities are for me, worth more than gold in life.

Later in life, I went for dyslexia screening as I identified with many of the criteria I came across in my childcare course. I found I had mild dyslexia and moderate dyspraxia. I do feel let down by my school, not identifying these needs. The diagnosis did explain why I had trouble learning and why this fed my insecurity complex.

I never felt supported by my parents, friends or teachers in school. (This I feel sad about), however I realise now, if I don’t speak up how about my difficulties how can others help. However at this point I was unaware of this and was a frightened lonely child, who had nightmares about getting lost in school, not getting to lessons on time and losing my time table. (My memory was so bad I couldn’t remember where my lessons were and when).  30 odd years later I still have the same nightmares.

I learnt to expect little of myself and stay below the radar so I didn’t get noticed and picked on. I was bullied badly at school, (consequently I tried to please everyone so I had a better chance of them liking me).

I “knew “ I would never amount to much, my parents had no faith in my abilities nor did my teachers, so I learnt to have no ambition, as everything was such a struggle and no one seemed to be bothered to show interest in me let alone get to know me. Consequently I choose to go into a trade my mum picked for me, hairdressing. (It was not what I was interested in but it required no qualifications).

At my first employment I was lucky enough to have an excellent manager/trainer, who taught clearly by example although she had problems understanding why it took me longer to do some procedures than the other staff, (a common trait of dyslexia).

However I had an excellent relationship with my work colleagues and clients and soon learnt to “act as if” I was confident. Inspired by self-help and positive thinking books. I was sick of “crawling through life on my hands and knees” as DR Rev Norman Vincent Peale quoted, so I took the opportunity of a new job to become who I wanted to be, (an attribute I am proud of).

I learnt to work very hard and to never be idle, to use my initiative and always be professional at all times when working with the public and leave my problems at home. I learnt to strive for perfection and give my work my best efforts even on my off days.

Through my work at the salon and running my own business I had many wonderful experiences of building fulfilling working relationships with my clients, co-workers and managers. I learnt to listen, to keep confidences, when to be quiet, when to be creative and flamboyant with my skills, when to laugh, entertain/be entertained by my clients and when to let my personality shine.

Over time I realised I needed to challenge myself more and decided on a change of career. My experience of volunteer work with in a preschool was extremely positive, offering me vital hands on experience and the offer of a job as an assistant, within 6 months, which I happily took up. Being given such an opportunity boosted my confidence and belief that you have to show the employer what you have to offer, so that they realise you are too good to loose!

However it was when I began over working myself that my symptoms reappeared with a vengeance. I was studying childcare and education at college part time, as well as volunteering in a preschool and running my hairdressing business.  I became exhausted to the point I couldn’t physically move off the sofa once I sat down. I would sleep for extended periods and felt so ill it felt like I had the onset of flu, suffering from jet lag, migraine and the worst hang over imaginable! When the fatigue became so bad I couldn’t wake when roused I knew there was a problem.  I began to work part time and slowly cut down my hairdressing business.  I told no one why. I was too ashamed.

Cutting down my activities helped my energy levels and thinking I had made a recovery I enrolled on the brilliant “Access to higher education” Course studying a range of subjects. (Including human physiology, psychology, sociology, maths, English, information technology and study skills) that brought me up to university entry standard.

The support during this course was outstanding. I shared my concerns that I may have dyslexia and I wouldn’t be able to study maths as I failed to badly at school. However the tuition was so excellent I came out with A level standard qualifications in all subjects where this grade was possible, and obtained marks between 68- 96% something in my school life that I would have found impossible to believe! Thus is the power of excellent education, support, encouragement and understanding. Because the lectures were paced well I managed well.

A brief stint at university studying ” health promotion” ironic! my time at uni was caught short, due to becoming very ill once again along with the lack of understanding  from myself and my personal tutor  regarding my illness. I can’t help thinking that if I had had a diagnosis then of having ME, and the understanding that it brings I may have been given more support and I could have finished my degree.

My GP initially diagnosed depression, but after subsequent visits he agreed that depression alone does not cause muscle weakness or fatigue so bad that my legs constantly gave way, or seized up and refused to move, I often collapsed and fainted. He then diagnosed with CFS (Chronic Fatigued Syndrome)/ ME (Myalgic Encephalomyelitis) and reduced my hours from 24 down to 4 hours a week.

I couldn’t sleep until the very early hours so I was like a zombie, I was constantly fainting by now and was unable to retain any information, I was having trouble picking up unsettled children as my limbs were so weak, they would collapse and noise and light made my head and eyes hurt so much and my brain was overloaded to the point I could hardly make sense of what I was doing.

Not having a diagnosis of CFS/ME until my mid 30’s meant I spent most of my life struggling on my own feeling ashamed of my lack of abilities. Because I did not know what was wrong with me I learnt to cover it up. This often meant I was ostracized from my co-workers (rumour had it I was unsociable), as I used to go home at lunchtimes. My excuse was to see to my dogs, the reality was I needed to give my brain a break from all the noise, chatter & stimulation. I was often too exhausted to take on extra shifts as I was physically and mentally too exhausted. I feel if my manager/co I workers and I were all informed of my condition /diagnosis my work would have been more productive happier & more harmonious, as we could have then worked out my most productive time of day to work, how I could best contribute and have any adaptions provided to help me become more efficient, such as a wheelchair, when needed, working in a quieter environment and taking regular breaks.

The end of my working career began when I physically couldn’t move my limbs to get out of the car, they felt like lead once they eventually moved but I had a constant overwhelming desire to lie down it took so much energy to sit up and stay awake. I couldn’t concentrate on work for more than 30 minutess before my brain felt paralysed. My brain fog was so bad I found it so difficult to do the most mundane tasks, my memory was appalling and I began to become frightened as I thought I was losing my mind.

Eventually I was sent to see an employment support doctor at the local council who stated I was medically unfit to work. I was devastated, my GP had a hard enough time giving me sick notes as I argued with him, as I “had to work”. I cried and asked if there were any alternatives so I could remain at work, but he said there was none, I felt like I was tossed on the employment scrap heap. It was one of the worst days of my life. I desperately wanted to work, I loved my career, and I was devoted to it. However there was, at that time no support available.

Much later on I began studying with the ‘Teaching Assistant college’  from home. this was a very positive experience  as the principle had suffered long term health problems herself and had a great deal of empathy for my condition, and understood that I could only submit work sporadically when I was well enough. My tutor under her guidance, helped boost my confidence enormously as she saw my potential as a professional teaching assistant (TA). The principle and tutor gave me great praise for my essays and assignments. With their encouragement I passed the course (with A grades!), which included a module on working with a pupil with a learning difference/disability from which I learnt a lot about making the environment accessible for all pupils being mindful of there disabilities and abilities. The principle, my tutor and I were so overjoyed. It made a huge impact on my confidence and ability to learn.

I was so over joyed after finishing the course, I applied to the local primary school for voluntary work as a TA/individual support assistant. I made sure I was honest about my condition and after making a list I stated my strengths: commitment to excellence, hard-working, dedicated, committed to furthering my education and good practice, my empathy & understanding towards children particularly those with specific needs, patience, humility, kindness and diligence. As well as stating the areas where I struggle due to my condition and adaption’s that may be helpful. Such as working one to one with pupils with specific needs, in a quiet place, going in at quieter times of the day where I would be less stimulated, being able to make it in for a couple of hours each week at first and then as things progressed increasing my volunteering hours at the school. The school was completely happy with this, I chatted to the placement officer and was assigned a class to work with. Unfortunately during the summer holidays I sustained significant head injuries due to my falls at home, which meant I was hospitalised for some time and my condition worsened, consequently I was unable to take up the role within the school. I would like to think after informing the school honestly of my situation we may be able to resume my role when my condition improves or when reasonable measures can be made to assist me in my job role.

Unfortunately I have not received any support at all since I have been signed off unfit to work. I took it upon myself to study my level 3 teaching assistant qualification and also to take on voluntary work placement as a TA in a school.  I managed both for over 3 years, until my health deteriorated so much that my GP finally had his say and put me on a strict pacing regime under direction of a no nonsense occupation therapist. Which meant I had to give up all activities apart from eating and toileting, building activities up a few minutes at a time under her direction.

Sadly I also received no help from the job centre. Where I was told to come back in 6 month’s time, as I was too unwell to undertake the most menial of voluntary work for a minimum amount of time. I virtually begged the interviewer for information on organisations who could help me build up my confidence and assist me in slowly rehabilitating myself back into society in preparation for when I felt well enough to undertake some kind of voluntary work. Sadly I was told that no organisations existed for people like me stuck in limbo, too unwell to work, but so desperate and willing to, given the right opportunity, environment and support.

All I want is, to work so so much. I desperately miss being part of society. To interact with others, and to make a positive difference to people’s lives. I feel I have so much to give if I am given the understanding and support I need. I so want to get back into employment. Please help me help myself!

My advice to others in a similar situation would be to approach colleges and voluntary organisations inform them honestly about your condition and see if there is any courses/positions available that you are interested in that will help you further your knowledge/experience and give you confidence in your abilities in the workplace. In fact I am in the process of contacting the Open University to see about studying one of their short courses. I feel this will give me some purpose. I understand that there are huge concessions for those on benefits and a lot of help available in the form of equipment and assistance if you have a disability. It is encouraging to know there is support out there in the world of education.

To any employers reading, may I suggest, getting to know the person, rather than being put off by the disability. Take time to find out who they are and what they have to offer. One often finds that people who have had to overcome adversity are stronger, more driven, and conscientious and focused than some people that do not have to cope with such difficulties.  Also find out how you can support the candidate to strengthen their skills, assets and further their knowledge/experience and positive contributions they can make to your workplace..

Work personally means everything to me! (My work is my identity) I get such a buzz out of being of service and doing a job well and constantly improving and updating my skills and abilities. “I work therefore I am”. I look forward to being employable again, ideally to help others in similar circumstances to my own. If I can do it so can you!

To read a Guidance note on M.E. click HERE 

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