Self-Censorship (or, the lost art of telling it like it is)

I like to make my loved ones feel happy. I am almost compulsively nurturing, and slip very naturally into ‘Mummy-Jo’ mode. I love to spend quality time with people, and am at my happiest when I can cook for people, give handmade gifts, write personal letters and cards, and ‘be there’ for my loved ones. I wish that I could give back to my friends and family as much as I receive from them. I know that’s unlikely (verging on impossible), so the only way to make things equal is for me to take less. I don’t want people to feel obliged to look after me, and I certainly don’t want to ‘pollute’ the precious few social events I can attend with my medical misery.

That’s ok, though, because I started a blog, didn’t I? A blog that would be a safe place where I could complain at length, and then send it out into the ether to be read (or not read) by friends and family. It should have been the perfect solution.

It could still be the perfect solution. All I have to do is write.

So why haven’t I written anything for so long?

One reason is that I don’t want to be responsible for making people feel sad, whether those people are close friends, casual acquaintances, or someone who’s stumbled on my blog while trying to find out more about Ehlers-Danlos syndrome (EDS). There’s quite enough awfulness in the world without me playing the Melancholic Minstrel, singing ‘pity me’ songs on loop.

A few months ago, someone very close to me asked for a detailed medical update, but stopped me after a minute or two because they were finding it too upsetting. As far as I was concerned, I’d barely scratched the surface. I had hoped, at the very least, for a listening ear and a hug. As it was, I ended up being the one doing the comforting, and left the conversation feeling guilty for having upset someone that I love.

At other times, when I have tried to talk about medical stuff, and especially about some of the future plans that I’ve been putting in place, people have told me that I shouldn’t be so negative, and that I should focus on my blessings, and on the here and now, instead of seeking out troubles for tomorrow. I agree with that in principle; there are lots of very good things in my life, for which I am extremely grateful. There are also some Terrible, Horrible, No Good, Very Bad things, and feeling that I can’t/shouldn’t talk about them is very isolating. I’m trapped inside this body that is crumbling around me, cut off from the outside world; grieving for lost abilities, lost freedom, lost dreams. I’m afraid for the future and the new tortures that my body has in store for me (or even just more of the old, familiar tortures), but I’m even more afraid of not having enough future left ahead of me, and having to face the thought that I may shuffle off into the sunset, leaving no legacy; nothing to say that I was here.

My reaction to all of this probably should have been to continue to write the blog, giving you the choice of whether to read every word of it, read some of it, or not read it at all. But it wasn’t. I didn’t want to be responsible for making you feel sad. I didn’t want to admit that I can’t cope; that I feel as though I’m barely existing, and certainly not living life to the full. I didn’t want to see, in harsh black and white, how small my world has become.

Something changed for me recently, though, which is why I’m writing now. I saw a friend for the first time in ages, and heard about some of the dreadful things that have been happening in her world – I felt so sad that I hadn’t known. Not that I could have done anything, but I could have been there, on the end of the telephone, or sending hugs and chocolate via Royal Mail. I hope that you don’t feel the same way when I do finally admit how bad things have been.

I’m sorry for not giving you the opportunity to decide how much you want to know. I’m sorry for not letting you be there for me and my husband. I’m sorry for not trusting you to handle my raw emotions gently.

So, let’s try this again.

I will write.

The rest is up to you.