ME Awareness: The Lost Years by Tricia Marsh | 09 May 2020

May 9, 2020

The Lost Years by Tricia Marsh.

I loved my life as a teacher/lecturer of fine art and art history. But in September 1978 a flu-like illness quickly spread through my tutor group and pupils. There were many absentees, including myself.

I repeatedly pushed myself to return to work. Every time I ended up off sick again. I was bewildered by a situation where the will to be well failed every time.

Tricia Marsh.

Even though it made me worse, I was encouraged to push myself by everyone I knew. I slept most of the day and night, but the symptoms became more severe.

I was an in-patient at various hospitals. Brucellosis was suspected, then discounted. I was fed the usual line: it’s a virus, you’ll be better is six months. Then I was told that nothing wrong could be found.

I finally got a diagnosis of myalgic encephalomyelitis/encephalopathy from a consultant neurologist and this was confirmed a few years later by a second neurologist. I had to take early retirement but believed I would get better and be able to return t work.

However, there was never any improvement in my health, only deterioration which was exacerbated by relapses and hurt caused by family attitude.

Apart from others who have this disease, I have never met anyone who knows what M.E. is. The old ‘yuppie flu’ label prevails. The following is the cost of 40+ lost years caused by M.E.

  • People do not choose to give up their jobs and their livelihood, or to throw away hard won qualifications that would enable them to achieve their hopes and ambitions and the means to choose where and how they live.
  • They do not choose to spend so much time alone, unable to ‘do’ radio, TV, sunlight and noise.
  • They do not choose the interference of brain fog, making understanding or taking part in conversations difficult to impossible, or the dire difficulties with speech.
  • Hopes of relationships and a family become unattainable, experiencing hurt and heartache at being unable to participate in family life. Parents grow old, siblings have children and it all passes us by.
  • You cannot be there to help a loved one in a time of need, and no-one understands why you’re not there for them.

So much has been taken from our lives. Yet our experiences give us strength. We adapt and survive.

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