Chronic Fatigue Syndrome: The Long Journey to Acceptance

depressionNot long after my thirtieth birthday I came down with a string of viruses, which I never really recovered from. The constant exhaustion sent me back to the Doctor again and again for several batteries of tests, which revealed, in my Doctor’s words, that I was “the healthiest sick person she knew.” At the time I was a full-time science librarian, supporting nine departments in terms of overseeing their library needs and teaching information skills. As I got more ill I also developed depression and ended up being virtually housebound and off work for several months. My depression was diagnosed and I started on antidepressants and counselling, and managed to get back to work for four days a week. However, what later turned out to be ME/CFS flare-ups caused further bouts of sick leave.

Chronic-Fatigue-Syndrome-Health-Care-GuidelinesOnce my depression was clearly under control and I was still ill, I was finally diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  The diagnosis took nearly three years and was an extremely difficult period for me and my employer. Along the way there were many meetings with my managers, Human Resources and Occupational Health. Some of the things that helped were the fantastic support from my Union (UCU), the Staff Welfare & Counselling Service, and my colleagues.

supportI would encourage anyone with a chronic illness or disability to see what types of support your institution and union can offer, and take advantage of those that work for you. Talking about an illness, especially just after diagnosis or when suffering from mental health issues, can be very upsetting, and it’s very useful to have someone present in meetings to speak on your behalf if you’re unable to. I am grateful that the University Library agreed that I could go part-time once it was obvious that I was no longer able to work full time.

tick-list-370x229ME/CFS symptoms and severity can vary tremendously between sufferers. There are no treatments for the condition; just things that can help you manage it. A course of cognitive behaviour therapy, with a therapist who specialised in the area, helped me greatly to deal with my depression and to start to manage my ME/CFS better. The other thing that helps is learning to pace yourself and discover what level of mental and physical activity you can now cope with.

My main symptoms are:

  • ŸConstant chronic fatigue. It’s difficult to explain how this type of tiredness feels, the nearest I can get is how you feel when you have flu, with no energy. Rest or sleep often makes little difference. The level of tiredness fluctuates, but pacing helps. For example on a typical work day – I work in the mornings, rest (but don’t sleep) for several hours in the afternoon, do small tasks in the early evening and then rest until bedtime.
  • Nausea and IBS symptoms.
  • Memory and concentration problems. Including not being able to remember/find words when my tiredness levels are high.
  • Palpitations (very scary but only happens on very bad days).
  • Lack of body temperature control.

What has helped in the work environment was coming to understand what I can or can’t cope with, and agreeing with my team how we manage this between us. For example, I am now a Research Information Advisor in the Library Research Services Team and I do a lot of PhD and researcher training. I enjoy teaching, but it is tiring for anyone! Things that help in this area are having a certain amount of control over the scheduling, so that I’m not teaching for several days in a row, and team teaching where appropriate.

acceptance-testingOne of the hardest things to come to terms with was that my condition is unlikely to improve. Some people do get better from ME/CFS, but the longer you have it the less likely you are to make a full recovery. At the time I got ill I was applying for team leader roles and looking to work my way up the library management ladder. That’s no longer a feasible option, so I’ve moved my focus to learning new skills within my current role and improving my teaching practice. Being ill also meant I re-assessed my life generally and made me realise I also wanted to spend more time on creative activities like my fiction and comic book writing.

The other thing I’ve found difficult, but useful, in recent years is to try to reframe my illness as a disability. “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” This helps me and others try to accept that there are things I cannot do due to my disability, rather than there being an expectation that I will get better.

acceptI became a bit of a self-help junkie when I first became ill, before I knew what was wrong and thought it might be stress-related. This gave me the impression that I would magically attain a state of Zen acceptance of my limitations. Alas, this is not the case. I have to accept each day how I feel and what I’m capable of that day. After nearly eight years of living with ME/CFS, sometimes the acceptance comes easily and sometimes it doesn’t!

Selina Lock

Selina Lock

Selina Lock has worked in higher education as a science librarian for thirteen years, after doing a degree in Genetics and a MSc in Information Science. She is currently a Research Information Advisor in the Library Research Services team at the University of Leicester, where she supports STEM PhD students and researchers. Outside of work she is well known in the UK Indie comic scene for editing The Girly Comic for ten years, helping to organise the Caption comic convention for six years and being one half of Factor Fiction publishing. She tweets as @selinalock.

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3 Responses

  1. Jo says:

    I am teaching with ME/CFS and it is a constant struggle as my employers are not allowing me to drop tutor which would allow me a regular break. I have the union involved who are being really helpful, and my doctor but the additional stress is making my condition worse and today I crashed. Your story shows that some employers are accepting of disability but sadly we have a long way to go for invisible illnesses to get the recognition.

  2. Paul Rudman says:

    Thank you for sharing your experiences Selina. I think too many people suffer from this in silence, speaking out is really important.
    I first had ME/CFS in October 1999. The first year was bad, the next one bearable, the next 3 slowly improving, but it took around 10 years to achieve a “new normal”, which is almost normal, but not quite (eg I still need at least 9 hours sleep and get ill if overtired).
    In case it helps anyone, the following helped me (not much, but they did help – everyone is different though): 1) not using an alarm, when waking not to move at all until I felt ready, then starting slowly; 2) Pacing, especially on good days (denial makes things worse); 3) Multivitamins with zinc; 4) Paracetamol for the temp. control (low dose); 5) Feeling safe, unburdened and loved
    It needs to be easier to get diagnosis and help for this condition; at the moment it seems to depend on which doctor you see. The more who speak up, the better.

  3. Julie Blaney says:

    Thank you ever so much, Selina, for sharing your story and experience of M.E./CFS.
    I too have been diagnosed with M.E after several years of tests. I am a part time student at LJMU and am also a mother to an 8 year old so have a busy and full life. Reading your account of M.E has helped me so much because I am having difficulty accepting the diagnosis and living with the diagnosis. I feel that people don’t really understand the condition and therefore I feel embarrassed when I have any of the symptoms. My tutors however are very supportive but I still think that they question the validity of the illness.
    Anyhow, thank you again Selina. Look after yourself. 🙂

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