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I'm sitting here in hospital, just writing and waiting. I'm here for my girlfriend today, instead of me for once. Whilst watching all the doctors, nurses and other medical professionals rush past and going on their daily business. I just sit and think about all times I've asked for help and support from these professionals. These professionals or, let's face it, people. I can see how hard they work, too hard. It's really not fair on them and the patients. As I am someone who has pretty much suffered all my life from chronic illness, I have seen and been through the systems and professionals that so many other people who suffer with chronic illness endure. I bet you weren't aware of how bad it is for some people. Bet you didn't realise how hard it is to get support or help in all forms — medical, housing, jobs etc.
What is it like living with chronic illness? It's almost soul destroying. It stops you being who you are to a point, you can't seem to or with great difficulty do the things you want to do and need to do. Every illness is so different but also all too similar in how it affects people's’ lives. For example, I would say most chronic illnesses make the sufferers extremely fatigued but then you could also argue there are different types of fatigue. Most the time the doctors and GPs have no idea about the conditions and don't know how to help. You just end up taking a ride around the healthcare system, a ride that feels like it has no end. Considering this probably isn't the same everywhere in the UK, some places are better than others but the point is, that unless you have the money or access to get private treatment, you don't get much treatment at all.
Society doesn't understand chronic illness, a lot of chronic illness is invisible. People forgot or don't realise that just because someone looks ok, doesn't mean they actually are. In many jobs and workplaces they aren't accepting or helpful, if you are ill or have a disability they just don't want you. They don't and won't accommodate you and you are just expected you do exactly what they want, ie, 12 hour shifts.
The government doesn't want to recognise us either, I've been trying to get benefits to help my jobless ill self for about a year now, I still don't have any help from the government. They make it as hard as possible for us to get support from any benefits, its crazy. It's forcing very ill people to work when they shouldn't and this just worsens their condition. When you look at the benefit application forms and other similar forms, the way in which the government have set them out, makes those of us diagnosed with chronic illness, not even ill according to them and that we should be working like someone who is fit and healthy.
This is crazy, since at least one to two days a week I can't walk up the stairs or struggle so much that my girlfriend has to give me an over-arm lift to help and this is only one symptom out of so many. Obviously I am going to struggle to work a full time job. I even struggle to actually get any kind of job because employers don't want someone with chronic illness, they don't want to make reasonable adjustments in the workplace. Also the thing is that most people who suffer with chronic illness, suffer with multiple conditions, and this makes everything doubly as hard, and guess what? The government still won't let you qualify for benefits.
Particularly, there are young people with chronic illness through no fault of their own and it just feels like the government hates us. Why are they giving us such a hard time? It makes you think that the reason is because we are useless to them, because we are apparently not contributing to the economy and the country. Its like the older people are ruling the roost and I don't say this thinking that young people should rule the roost either, we want equality and fairness. we definitely still don't have complete fairness or equality.
I've been fairly lucky in my life, I have family who has always had money available, I've had lots of opportunities and completed a fairly good education. I've been ill since I was a child and all these privileges I've had helped me not be so ill. I can't begin to imagine how much harder it is or was for people who do not and never will have these privileges and suffer with chronic illness. If I was in that situation I probably would be dead or at the very least a lot worse off with my health.
My girlfriend and parents support me a lot now because they can and I am so lucky to have them. I will continue to fight the system and try to get as much support as I need. Also at the same time of course I will try my best to do things for myself. Even though it takes longer without the help of a medical professional. I'm definitely going to try to do things I want to do and need to do, so be it if it takes longer and is harder to do than any healthy person. At the end of the day, if I can't be me then who am I? Just no one.