I told the physio I was crying so much because David Bowie died. It was mostly true but there were definitely tears of frustration in there, the same ones I’ve been sobbing out for years at the lack of help.

When I was diagnosed with Ehlers-Danlos Syndrome in the summer of 2014, the letter my consultant from UCH sent to my GP included several recommendations for referrals to help with management of this condition. Finally, I thought, I would get some help. 18 months later, I feel like I might as well have asked a brick wall.

In that letter I was given a strong recommendation to see a hand and foot specialist. My GP tells me they can’t refer anyone, even diabetics to podiatry. As for hand therapy, my physiotherapist says there is a specialist within the trust I’m having physio under but they only accept referrals from consultants. I no longer have my EDS consultant because cuts to NHS funding mean she can now only diagnose patients then discharge them back to the care of their GP. I’ve asked for a general rheumatology referral and been refused because “why would [I] need it?”. I need it because having a specialist is the only way to get help, apparently, and that should be reason enough. (Other recommended referrals were GI and Autonomic clinic, I’m hoping to get to the Autonomic clinic through my cardiologist who I already had before diagnosis.)

Hydrotherapy or massage therapy won’t happen in this trust. How can I get them? “Move”, said my physio, sardonically. I’ve warmed to him slightly. He replaced my lovely bright therapist a few months ago and his vaguely dour approach was quite off-putting. He keeps demanding of me what I WANT from physio and “not to get worse” isn’t a good enough answer. However, he says he has a plan and I’m inclined to trust him. He seems as frustrated at the limitations the NHS has put on treatment of chronic conditions as I am.

It’s exhausting to keep fighting the same battles. It feels like I’m going in ever-decreasing circles, chasing my tail, lost in a maze. I know I’m not the only one in this position because of cuts to health services, and it seems incredible that cuts affecting so many people could have been made.

“Getting support for your disabilities is a full-time job you have to fit around being disabled.”

That is something my friend Richard told me this morning, after I had vented a bit about the near-daily phone call to the DWP I’d just finished with. Having dealt with serious illness himself, he knows how exhausting it can be to keep up with forms, certificates, letters, phone calls.
This has been the last 9 months of my life, ever since I applied for ESA and PIP to help deal with disability. The minute I had my diagnosis in hand last year I applied for help. I was no longer able to work part-time in pubs, as it’s not very useful when you can’t lift things heavier than a full pint, climb stairs, or unscrew beer taps without dislocating a wrist. Eventually even part-time studying was impossible. Right now I would describe myself as a full-time cripple. Every day is a measured exercise in trying not to be in pain, trying not to injure myself. A week where I have no appointments in one hospital or other, or at my long-suffering GP’s is a rarity. And then there’s the DWP.

It’s my second job. I’m moonlighting as a benefits claimant. Every month I pick up my medical certificate for ESA, get it sent internally via the Job Centre, and wait with my heart in my mouth to see if it’s arrived at the DWP HQ in time. Any lateness will result in a sanction, and when there’s only £72 odd to live on per week, it doesn’t leave you with an awful lot of excess to fall back on if this happens. The GP who signs the medical certificate is not always my primary GP, so with no knowledge of me they just pick the first thing off my medical records and the DWP don’t like it when my reason for being unable to work is “hypertension”. I’ll be doing that anxiety week until I’m finally called in for a Fitness To Work assessment, whenever that is. It’s easier to keep us in limbo than process our applications.
Then there’s the ongoing PIP appeal. I’m calling them daily at this point to find out why they haven’t sent the full medical report to me yet so I know what I’m appealing against (apparently you can’t just say “took all medical evidence and chucked it in the bin along with everything I had to say”).

Trying to prove your disability to a body that is determined to deny you access to support is exhausting and time-consuming. PIP is the gatekeeper to so many things. It took me literally months to get a Freedom Pass for transport from my local council because I didn’t have PIP yet (it was 9 months between my application and my assessment for PIP). The fact that many people may be seriously disabled but still not deemed worthy of PIP seems to escape the decision makers. Even when I fell three times in a fortnight on public transport, and reported this in my mobility assessment,  it still took a letter from my GP to change their minds. After each phone call to the DWP I’m tired, flat. It’s mentally taxing, demoralising. I haven’t hung up the phone feeling optimistic in months, not since I first applied for ESA and PIP. I feel like a number, a process, that whoever’s on the end of the line is ticking boxes, filing my request onto a conveyor belt heading straight for a furnace. Staying focussed and not giving up is the hardest part of the job.