Katie's Story

I am 24 years old. As long as I can remember, I've wanted to be a librarian. I began life with a hereditary disabling condition I never knew I had, which was left undiagnosed for more than 20 years.

I can just barely remember a time before chronic pain; hypermobility-type Ehlers-Danlos syndrome often starts to hit its sufferers at around the beginning of puberty, and so it was for me. Thanks to doctors having treated me like a hypochondriac for many years and therefore my inability to catch it as early as it could have been caught, EDS has irreparably damaged my body. I have secondary fibromyalgia - which plenty of people giving medical exams like to pretend doesn't exist - and am in considerable pain every day of my life. My joints dislocate at will - their will, not mine. I end up in Accident and Emergency at least twice every year. I also have a form of bipolar disorder.

I went through school and, though difficult, through most of my college years. I haven't yet managed to complete A-levels. I worked part-time, but found the strain on my already-taxed body to be so much I couldn't sustain that and studying. Over time my health has deteriorated - much more quickly than it might have done had I had adequate medical treatment and been without the immense stress levels caused by the disbelief of others. None of my conditions are visible to the layman's eye. Even I can't see most of the things that are broken in my body. But they are there.

As my health has been getting steadily worse, I've been forced to rely on benefits and DLA for support. Until two years ago I had no formal diagnosis of my chronic pain; despite every step causing me agony, and vastly limiting how far I could walk on any given day, I was restricted to low-rate care and no mobility component prior to my diagnosis. Every time I have had to go through the DLA mill - and when you are under 25 years of age, that's a reassessment every year! - it has spiked my stress level, emotional and physical. I was finally, after being diagnosed, awarded higher-rate mobility component, last January. (Still lowest-rate care, despite the fact that I rely on the social care system of my local council to help me wash and cook for me, due to the cognitive impairments that come with my health problems.)

Now, after having that weight taken off my shoulders for a while, it's been thrown back. Filling out all the DLA forms and dealing with IB (as I was put on that prior to ESA's introduction, though I get no money from it as I had managed no NI contributions by the time I needed to claim), going through a system and enduring a society that tells me that I can only be as disabled as I look - which is to say, hardly at all, though I walk with a stick daily - drives me to the edge of suicide. I have bouts of severe depression every time I have to go through this process - and it would not be an exaggeration to call it an ordeal.

Tightening up the IB/ESA system is not making it more difficult for the tiny proportion of people who do malinger and "fake" disabilities. They have the energy, the stamina and the emotional endurance to make it through. Those of us in need often do not, and we struggle. Plenty of us give up because we can no longer stand to fight the system.

Quite honestly, I'm not sure I can do this again either; my mental health deteriorates every time I endure the battle to obtain financial help I desperately need.

There are less than half a dozen specialists in this country who are knowledgeable enough about my condition to treat the outward manifestations of it - there is no really effective treatment, and no cure. If I can't get adequate medical care because of the lack of specialists, how can ATOS claim to know enough about my condition to determine whether or not I am in need of help? The simple answer is that they can't, because they don't.

And yet --