daily struggles

I would like to make this loud and clear. This is hard. Living with this condition is hard. At times it feels almost impossible. And it isn’t convenient, it doesn’t go away when friends come to visit or when a special celebration comes around. It doesn’t leave you alone after a long day so you can relax and wind down before bed. It doesn’t co-ordinate its schedule with yours so that you can have a day off now and then. It’s full on, it’s all the time and it is hard.

The hardest part it that it isn’t and can never be the only thing going on in your life. Life goes on, family, friends, job, school, whatever you have going on will happen regardless and make the usual demands of time and energy. The thing that I think most people don’t realise is the sheer amount of energy DID takes from you. I suppose it makes sense on a mechanical level because instead of one set of thoughts, emotions within one personality your brain is maintaining multiple sets of thoughts and emotions.each with separate personalities. Instead of directing all our energy towards simply being ourselves that energy is divided. Perhaps then what also makes sense is number of headaches I get. I don’t know if others with DID get this but I feel as if my head is trying to turn itself inside out on a nearly daily basis. There are other issues connected to this such as an aversion to sunlight due to sensitive eyes but a lot of it a purely mental headache. Doctors call it a tension headache which I think is Dr speak for “we don’t know why you have a headache”.

The other part is the noise. It can’t be specified any more than that, it is just noise. Sometimes voices, but mostly noise. I guess that’s what comes with being a walking foster home, I mean, how many kids are ever quiet? Because of the internal noise, external noise is a no no, I just can’t handle it, it seems amplified and makes my head hurt even more.

You become adjusted to it all, I can’t remember life without all these things; the headaches, the fatigue, and aversion to noise, but living life like this everyday doesn’t make it easier. In fact I’ve found it gets harder because as you get older you become more and more aware that other people don’t have these problems, these constant drains on their resources. I suppose everyone has something to cope with, everyone has something that makes their lives difficult and it’s always the mundane constant things that cause the most hardships.

DID, like every mental health condition and illness, is invisible. And like all invisible conditions we face the daily choice of hiding the bulk of what we endure or risk losing the interest sympathy and compassion of those around us through mere repetition. People do tend to respond more readily and persistently to things they can see – perhaps that is partly why so many people with mental health conditions self harm? An attempt to make the invisible, visible? Emphasis on partly.

Like all people with any condition or illness, I have good days and bad days, even good and bad hours, but the point that often goes unsaid and unnoticed is that no day is without its symptoms. The best days will still come with fatigue and a mild headache and a craving for silence and peace. These are just the mundane physical symptoms that are always with me, on top of which come the many more complex and ever-changing symptoms of dissociating, alters and flashbacks and memory loss. The annoying thing is I often think I could live with the DID quite easily, or at least more easily, if I just had that bit more energy and no headaches weighing me down. My coping strategies work well now, my support network is strong and my routine is set. But until someone manages to tap into that endless fountain of energy and enthusiasm shown by our children, and make it available on the NHS of course, I guess there’s nothing for any of us but to keep marching on.

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