To Theresa May, From a Chronically Ill U.K. Citizen

Dear Theresa May,

I’m going to start by explaining a little bit about myself. My name is Laura, I’m 25 and I live in South England. I have a degree in English Language and Education Studies; university was the best three years of my life. I worked hard and played hard. As a reward for all my hard work, I am now saddled with a hefty debt with Student Finance, which I’ll probably never fully repay. I like singing loudly in my car to S Club 7, reading, traveling, spending time with friends and I watch a little bit too much “Four in a Bed.” Much like any other 25-year-old woman.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I also have Ehlers-Danlos syndrome, fibromyalgia, reactive arthritis, asthma, various mental health conditions and suspected cyclical vomiting and gastroparesis. The past few months have been tough. I don’t want your sympathy but I have been very unwell. Because of this, my medical team and I decided that I needed to be on long term sick leave. This meant I needed to turn down my dream job and drop out of my part time college course. I have been working since I was 16 years old; said dream job was working in children’s social services. I’m amazed that I got the job, not because I doubted my ability but because of all the cuts made to children and youth services. Going on long term sick leave is not a decision that was taken lightly. However, due to my illnesses, I am sick numerous times a day. I haven’t eaten a proper meal since February 1. I am malnourished, losing weight rapidly, exhausted, scared and my hair is falling out. Losing my hair has hit me hard; it’s part of my identity and it takes clever styling every day to disguise the balding and thinning areas. This is on top of daily dislocations of my joints, widespread pain, low blood pressure and having a low immune system.

You won’t like this, but I haven’t been earning since mid-November. So that means that I’m not paying tax or national insurance or my student finance debt. Sorry about that. Like I said, I’m very unwell. I don’t like it either.

After much discussion with people involved in my treatment and care, I made the decision to apply for employment support allowance (ESA). Only where I live, this has been changed and now everything is under the umbrella of universal credit. I’ll be honest, I was reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits, but my health comes first. That was what I told myself. Media coverage of universal credit hasn’t been great; that also concerned me. My previous job meant I had to help vulnerable young adults apply for benefits through the universal credit scheme, so I was prepared for the hoop jumping and being on hold for hours to DWP. What I wasn’t prepared for was the feeling like an utter failure.

Today I had my first “commitment meeting.” I handed over my fit note, so there was no doubt that I wasn’t playing a game and pretending to be ill. The letter from my GP clearly explains my current situation. On the application, I stated my numerous health conditions and treatments. It was explained to me that next week, I would have to attend the job center again and I would be looking at how to write a CV (resume) with my new work coach. As I’ve already said, I have been working since I was 16 and this was alongside studying until I graduated from university. I have a CV. I don’t need help in writing one. But still, I’m going to have to do this to tick the box. We will then be doing interview skills. Interviews don’t concern me and I am proud of the fact that every interview that I have attended has resulted in me being offered the job. But I will listen as I am told about interview skills, so that the box can be ticked and I can be “helped back into work.” Apparently sickness isn’t a reason to be off work, and instead it is down to my skill set.

I asked my work coach what would happen if I was ill and was therefore unable to attend appointments. He paused and then told me if I didn’t give them enough notice, I was at risk of being sanctioned. I explained again that I am sick numerous times a day, am malnourished and in a lot of pain. Sometimes, I can’t leave my bed because I am so sick. I can’t even make it to the toilet to be sick, so I have to use a bowl. It’s not dignified, but that’s my reality. I’ve been in and out of hospital, needing to be given fluids and intravenous anti-sickness medication to try and combat how dehydrated I’ve become. I’m genuinely very unwell, but I could be sanctioned for that. Hearing that has made me feel really anxious, which is likely to exacerbate my symptoms.

In reply to this, my work coach asked me “Right. And when are you going to be better because we need a timeframe for getting you back into work.”

I’m going to put this very simply: I do not know when I’m going to be better. I don’t know if I’m going to get better. This could be my new normal. That’s a terrifying thought, but there’s not much I can do about it. And instead of thinking I should apply for universal credit so I have a bit of financial security, I am now questioning why I started the process in the first place. I feel like a failure because I can’t work. I feel ashamed that I am ill. You have made me feel like this. Your government has made me feel like this. I have been made to feel like a burden to society.

I want to be at work. I do not want to be on benefits; it was a hard decision to make. I want to be doing what my friends are doing and working 9 to 5 every day and then going out on the weekend. But I can’t and that is something I have to learn to accept. But I can’t accept it because you and your government are discriminating against me because I am ill. I’m not lazy, work-shy or using avoidance tactics and all the other stereotypes you seem to hold about people who need to be on benefits.

There’s still no guarantee that I will be accepted and given universal credit. I need to go through the work assessment and I could be declared fit to work. So please explain to me what I am meant to do? Please explain to me how you think I am meant to survive in this given situation? Do I sound like I am fit to work? This isn’t just an issue affecting me, but I’ve had enough and I’m speaking up for all the people you are failing. Enough is enough — stop penalizing us for being ill. This is not a lifestyle choice. You’ll probably never be in a situation whereby you need to apply for universal credit, and all I can say to that is lucky you. But I really hope you’re never placed in a situation whereby you are unwell and therefore unfit to work. Because it’s a living hell, made worse by intense feelings of failure and shame.

You’ve let too many people down.