A good friend once told me that it will be even harder to get better than it is to get ill. At the time, this news was hard to begin to fathom. However, now I understand what her point was. When you are extremely unwell, there is nothing you can do to change the situation. It is horrific suffering for both the person who is unwell and then also for those loved ones watching. I might add, I’m not saying the suffering is harder when you are better than before at all. It is more the process of improving. Imagine, the path to getting seriously unwell is downhill, to improve you have to somehow go back up that hill.
When I became unwell, there was no control over the speed in which I was deteriorating down the mountain of health. In fact, I had no control at all in any aspect of my life. I didn’t make decisions, I just about existed. When I went to Narnia it started to become a different experience because it suddenly became about involving me in decisions about my own health. They were all relatively small decisions and my parents were always there to help me with that.
Knowing when to say “no” was difficult as I started my new life at home. There were always people in the house so I had to try and gage my energy levels to if I’d be able to cope. Just as I had to gage how much of an activity I could do before I would crash.
These are all trivial things that you learn to adapt to but my main problem was survivor’s guilt. It’s strange because I’d been fighting to get better for so long that when it started to happen it was surreal and felt like an out of body experience. I look back at the video diaries I used to keep and I see the struggle I had just to sit on the side of the bed. I waited eight years to be able to do that. Those achievements, whilst still being immense, made me question why it was it had taken so long but why on Earth I had friends who had been ill just as long as me, if not longer yet they still weren’t improving, in fact a lot of them were worsening and sadly passing away.
It just made me a guilty survivor, which may sound silly. In this week of World Mental Health Awareness day, I thinks it’s important to be open and honest, giving the vulnerable side of me a chance to breathe easy because it doesn’t come out very often.
I only came to realisation that this was what wrong a month ago. I question why I am lucky enough to have a support network, I have carers who take the pressure off my family, so they can be alert when they take over. I know so many friends who can only wish for that support. I know the only reason I did get that support was because I’d been in an acute hospital for so long and my parents fought for me to have care. My sister was already a Young Carer to my mum and to take on me on her own would have been too much. I’d also gone into hospital as a child, which meant I knew no different than having carers all the time. I know all of this but for some reason that guilt still trickles into my world.
The big thing that doesn’t help in the slightest is how chronically ill people in the U.K. have to prove that they are ill enough to receive any benefits. It makes everything a question, everything a fight – even those things that shouldn’t be one.
Dear Jay,
how are you in these autumn days?
You have nailed it. It is close to questions about personal freedom and responsibility, about all the little and big choices. Sometimes they have big consequences, sometimes not. In your case you are walking a fine line, like you are on thin ice, you need to asses your every step while at the same time you want to run at the other side of the frozen lake. I can see that it is difficult.
The survivor guilt you are feeling came as a surprise for me. Not sounding silly at all but it would never occured to me that you are struggling with this. Thank you for sharing your deepest thoughts and feelings. But not beat yourself up with this. Be grateful for the suppport but there is no real reason for you to feel bad about it (to feel survivor guilt) – it is not your fault there is inadequate care. I strongly agree that is a shame how little help and understanding chronically ill people get, it is outrageous. But can´t you see, that you are fighting it with all your might? The blog, the book, the testimony, participation in the film and so on – you are raising awareness and give insight into the world which is usually out of reach for others. The results will not be instant, but like with other right movements and struggles, people like you make the difference in the end.
Sending lots of warm hugs
M.