by Kathryn McIntosh (Tzunma Venerable Lobsang Khandro)
I was diagnosed with M.E. a long time ago. In 1977 I had a severe virus; I was on antibiotics due to pneumonia-type symptoms as well as influenza-type symptoms. I was home for a month. When I was a child I often suffered from upper respiratory problems and suffer from labrynthitis frequently, which affects my balance. During this first year I had no energy, I could hardly move. Now if I am honest here, I did turn to using stimulants during this year, just so I could go out and keep up with my other 17-year-old friends. I stopped using these a year later as they weren't helping and I no longer felt it was such a good idea (growing up, I imagine). I fell pregnant the following year and married. Yes, looking back on this now, it wasn't a good idea at all as my body had not recovered. Now it was busy creating a new life. After the birth of my son I was wiped out, no energy. They said it was post-natal depression. I wasn't depressed, just tired.
For the next 20 years they had me on everything they could throw at me! They did all the tests - diabetes, anaemia, the list is endless - and they came back negative. I had pain, migraine, back problems, sleep problems; I won't bore you because they are classic M.E. symptoms. I could name every antidepressant on the market for you, and a few sleeping tablets as well, along with reflux medicine so my poor stomach could handle all the medication I was given. I have taken mixtures of all of them at one time or another. And I can say that they harmed more than they helped. We live in a pill culture; if you have a problem, cure it with a pill, cover it up and make the patient happy. Now, this isn't true for everyone and I am NOT saying you should just drop your meds! Since then I have controlled things myself; I tried a few other things that helped a little, other things didn't. Whenever I went to a doctor the answer was the same, pills or "What do you want from me?" was one GP's query. I had no one in the medical profession to trust.
I have kept various jobs; I was a paralegal, a veterinary nurse for a few years after college, a computer engineer later, and finally a manager in the National Health Service. All the while in the background, quietly lurking was M.E. I had to be careful and sometimes, no matter what I did, I got very sick and very suddenly. This annoyed my employers, but I was not going to be "labelled". Even working for the NHS you cannot be open about an illness that they still consider all in your head. Oh yes, the HR department and your manager will tell you, "Come to us, we will help you. It's illegal to discriminate." Yes dears, but discrimination can be a subtle monster, and still happens every day. I saw first-hand the discrimination and dismissive attitude toward people with an illness, even within the medical profession itself. I know that anger is the enemy of good health and as a Buddhist I am dedicated of course to freeing the mind, thus freeing the body. So rather than being angry, I focused on the little things I could do. Then I did my best with that; if everyone else wasn't happy, well that had to be too bad for them. I would just quietly get on with it. No employer ever knew I had M.E., and that remained the case right up until my retirement this year. I never told anyone.
No friends, I don't recommend this to others; we should be able to tell someone and get help and be treated as equals. At the same time, I know you are all nodding your heads as you have been there too! I was from a different generation, the one where these kinds of illnesses were shameful, and no one spoke about it. So what do you do? I know, you are doing the same as me, saying nothing. Those of you who have spoken up may be regretting it. If you are lucky, your boss is supportive and that person deserves an award of the highest kind! Most of us remain in silence.