Sunday, 9 June 2019

On Getting Better

Hello my lovely loves,

Before we go any further, I’m afraid I’m not better. I’m still sick, and, although I have seen some (very small) improvements, I imagine that will be true for a while.

But today I wanted to talk about what sometimes happens when people do get better.

There seems to be trend I’ve noticed over the years where if a sufferer improves, either marginally or completely, they are often told they didn’t have M.E. in the first place.

In some cases I can understand it, either because they didn’t show classic ME symptoms or because they’re now trying to sell you something.
Even with others I’ve caught myself wondering. But I’m trying to train myself out of that because speculation like that isn’t helpful.

There is currently no diagnostic test for M.E. so we will NEVER know for certain. Speculation will never lead us anywhere concrete, so it’s an impulse that can only do yourself and others harm.

We’ve all had our run-ins with people who don’t think we’re disabled or sick enough, and it’s always hurtful. But it’s doubly as hurtful when it comes from another disabled or chronically ill person, someone who’s meant to understand what that feels like.

It’s ok to be sad about not being better. It’s ok to be angry about it.
But you can feel sad and angry for yourself and still be happy for others.
It may take time to be able to do that.
The Optimum Health Clinic has a whole host of Recovery Story videos on YouTube and for a long time I just couldn’t bring myself to watch them. It hurt too much, so I decided to wait until I felt ready.
Sometimes I would mute people online or unfollow if I couldn’t manage. I still do if it’s wall-to-wall new baby photos because that makes me sad, even when I’m happy for my friends who have become parents.
But there’s a fine line.

It’s ok to need a break, and to distance yourself if you need to for your own sanity, but it’s not ok to put that burden on the person who is better, and it’s certainly not ok to berate them for their joy, or to call into question their illness or their suffering.
They may have been misdiagnosed, they may not. But if you woke up tomorrow and were better, whether by miracle or new treatment or new diagnosis, would that change the suffering you’ve already been through?
Would the time you’d spent alone and in pain suddenly not have happened?
Of course not.
And how awful would it be to finally, FINALLY get better, only for everyone who you thought was on your side to berate you for it? To be angry at you for being happy you weren’t sick, or weren’t as bad? For even maybe having something extra or different to what you’d originally thought?

And who’s to say that your recovery wouldn’t give clues about where M.E. researchers might look further? It could be the beginning of a whole new breakthrough!

If you get better from ANY illness you do not owe anyone your silence or to only post sadness. By all means try to be sensitive - I think most people who have lived with this hell are all too aware of how difficult it can be and try to be sensitive to those still suffering - but you are allowed to be joyful.

I would be heartbroken if I finally got what I’ve spent years longing for only to discover that EVERYTHING I’ve done trying to help fellow sufferers and their allies on this blog, for example, was now deemed hollow and untrustworthy. Because even if I ended up having something else (which I’m pretty sure I don’t, even though most if not all sufferers have wished for it at some point) everything I’ve already done has been done under the impression I have M.E. In. Good. Faith.

If you need to mute that person on social media, fine. If you’re not able to deal with their joy, that’s ok. But please don’t make them feel guilty for having what we all crave so much. They probably already do anyway because of the messed-up way society treats the sick and disabled, particularly those with invisible illnesses.

The point is, they are not sending these things to you to hurt you, they’re shouting them to the world because they’ve felt silenced for so long.
We’ve already lost enough friends because we got sick. We shouldn’t have to lose more if we get better.

And in the end there’s one less person suffering in the world. Even if it’s only a marginal improvement. Does it really matter how or why? Surely it can only be a good thing.
Who knows? Next time it might be you.