Are you struggling to work with your chronic condition? Siobhan tells her story of fighting against the grain for her invisible disability
My name is Siobhan. I’m a young adult living in England, and I’m disabled. I have CFS (ME), joint hypermobility syndrome and fibromyalgia. It’s taken nearly 5 years for any doctor to say those words out loud.
I’ve spent my teenage years seeing more of my doctors than I have my friends, spending more time in my bed than out of it, and more time dealing with government departments, councils, education bodies and the healthcare system than I like to think about. Being invisibly disabled and caring about how I’m treated by just about every official body, apparently, is a full-time job. At least it feels like it is. Between my mother, myself and a select few people employed by the aforementioned bodies, we’ve fought many battles against a system that just doesn’t work for people like me.
We’re yet to win the war.
In recent months, I’ve had the pleasure of dealing with the Department of Work and Pensions. I say ‘pleasure’ sarcastically, if that wasn’t apparent. To put it more accurately, I’ve had the deflating, depressing and infuriating experience that is having your soul crushed by the DWP. I have been declared ‘fit for work’ after a Work Capability Assessment and 3 months on ESA (Employment Support Allowance) and have recently gone onto JSA (Job Seeker’s Allowance). I’m still waiting to hear from Capita after my Personal Independence Payment (PIP) assessment, which I failed in 2014. Thankfully, I’m not eligible for Universal Credit, which is the new benefit being introduced that has been said to leave claimants up to £200 poorer a month.
Anyone who is invisibly disabled can tell you how upsetting it often is to talk about their health, whether it be with doctors or with loved ones. Most of us, from my experiences, spend most of our time talking about our health and situations in the most positive way we can. We think about what we can do; when we talk about it, we’re usually talking about our good days rather than the bad. We’re taught to act like we aren’t really disabled, or like our disabilities are merely hurdles that we can overcome. So we constantly behave as if we well, or happy, when the truth is quite the opposite. If nothing else, this mindset distracts us from thinking about the sh*ttiness that is being disabled in an ableist world.
When you apply for ESA or PIP or any other support, you have to think of your worst days. You have to remember all the horrible, painful things you’ve had to experience, and everything that you just can’t do. Rather than talk about your strengths, you have to focus on your weaknesses. For pages and pages of questions, you have to admit to the support you need. When you go for any assessment, you’re sat in front of someone who is being paid to decide whether or not you are disabled. It’s stressful and it’s scary.
A total stranger has all the power.
For some people, like myself, this is one of the hardest things about being disabled and needing help. I don’t often talk about what I really need, or what I can’t do. Instead, I talk about what I can do (or more accurately, what I force myself to do because I don’t have the support I need) and my strengths. The forms and assessments are tough, they are triggering and they are exhausting. For others, it isn’t so difficult because they already know what they need and they know that they deserve this help.
However, I’m somewhat glad I have had to do all of this because they have made me take a much harder look at my life, my disabilities (and abilities!), and my needs. Because of spending so many hours thinking about the things I usually avoid like the plague, I know what I need. Rather than struggling on without support, I’m admitting my weaknesses and finally getting to a place where I can achieve. It has been so tough, but for the first time in many years I feel confident. I know myself better than I ever have done. No thanks to the British government, though.
I might not get better and I have come to be at peace with that. What I’m not at peace with, and never will be, is the way I am treated because of my illnesses. I will never stop fighting, for quicker diagnoses; for more accessible employment and education; for more effective support and treatment. I refuse to accept that this is always going to be the way things are, for me and for any disabled person.
Work Capability Assessments are a humiliating joke, but a necessary evil to be put through in order to stay on the right benefits for you (unless you have the right paperwork and diagnoses to avoid it) so prepare yourself. Look it up online and find information that's relevant to you and your illness/es and read it. You can find guidelines for what your assessor will be looking for, and if you can try and stick to what you’ve told them before. This is a test, you must revise.
If you are struggling, I urge you to reach out. If you’ve been wrongfully declared ‘fit for work’, or turned down for PIP, there are people who can help. It varies from county to county, but there are charities and organisations who can help you with everything from forms and assessments to helping you socialise. You are worthy and deserving of help, no matter who you are and what your disability.
We, as disabled people, are stronger than non-disabled folks think. We are fighters, survivors, and possess a level of resourcefulness that I have never seen in an always-abled person. How else would we navigate a world that isn't designed for us? We are amazing, for all our achievements. Some days I might not do anything at all, but that is still a success. I survived!
Invisible illnesses are an awful thing. What we go through and what we deal with goes so often unnoticed, but it is real and valid. Regardless of what the DWP or Capita might say. We must continue to shout about it until somebody listens and until things start to change, and then we must fight some more.
I’m never giving up.