You know, I've been ill these past few days and my body has been sending "I'm depressed" kinds of messages to me. I'm used to this having been ill for so long (a sum total of 35 years). I'm also used to having my thoughts and feelings and even dreams coloured by my ill-health. I am, however, learning to resist!
I made some awful mistakes and missteps over my years as an advocate for M.E patients. I fell into the trap of believing that medicine was the great Satan here. I supported, campaigned for, and trusted people who really didn't care for me, or people with M.E, at all.
But in the end I came through this experience hugely enriched:
I got rid of M.E, a disease that has blighted my whole life.
I contributed a tonne of good science and I stood firmly and publicly against the abuse of both doctors and patients.
Gosh. I am pleased with this. Yes, yes of course I'd like to have been able to help all the other lonely, suffering people with M.E, to have brought them all with me to this place of recovery and improvement but the rule here is clear:
Attend to your own oxygen mask before helping others.
I needed to stand against abuse and threats and shun in order to get well. I needed to see that "my" community did not reject these things. I needed to watch them destroy the lives of people who'd tried to help them. Only then, when I was aware of the full truth of the situation could I ever hope to help show the way to others.
Abuse harms its targets and it keeps M.E patients locked in endless, poisonous, wrath.
I've published almost 1,000 videos standing against abuse. I have removed myself from harm's way and distanced myself from those who harm others.
I dare say there's no-one in M.E who more clearly and regularly rejects the abuse of M.E patients and doctors than I.
And this is deliberate, for I have one last thing to do in M.E: to share how I got better.
I now have my final position on M.E activism circa 2020: "It's rotten".
And I think I am ready to be happy and content and positive again. Because it is exciting! I've a new idea about what M.E is and how people may escape it! If it helps just one other person it will have been well worth the effort.
M.E is a wet, black, peat bog consuming your limbs and smothering your life. M.E activism is marshland as far as the eye can see, filled with Will-o'-wisps and false trails.
It is very tempting to put all this horror behind me and live the life that has been denied to me for so many decades. But M.E patients are defined most by what they have lost and what they are not.
I am not a doctor.
And so my life will always include trying my very best to help and to be of service to others.
Onward!
*Marches back into the swamp ...for you if you want*.
