Sam's Story

A brief background first, just so you know where I am with all this. I'm a 24 y/o guy with EDSIII, Autonomic Dysfunction, (unconfirmed) Marfan Syndrome (family history of it, I need more tests done), Anxiety and Bipolar II. All of these diagnoses came pretty quick one after the other in the space of about 18 months from July last year. I've always been one of those accident prone, clumsy, forgetful people. When I was growing up, it was always "growing pains" or "hypochondriac" but my body (from neck to lower back, chest, arms, legs, etc) is covered in scars. Although I have scars everywhere, my skin is still incredibly stretchy, soft, and smooth, like a silky bread dough. My condition has been unknown to me for most of my life, I've just had to get on with everything and struggle which made me very stubborn. However, since I hit 20/21, I've been deteriorating rapidly and haven't been able to physically fight it like I have been. Now I'm 24, I'm very close to giving up and letting it win.

My ordeal trying to get DLA has been a nightmare. Since I was 9 I've been using crutches as I had really weak ankles (dislocations) as well as a fused talus joint in my right foot. I have had virtually non-existent mobility for about 15 years, but I refuse to use a wheelchair as they cost too much for me and I don't want to be restricted further. But as it was only a "unresolved injury due to flat feet and weak ankles" there was nothing I could do. With the diagnoses I got last year, I made the jump to claim for DLA. After help from the welfare department at my district council, CAB and my doctors, even after tribunal I am only eligible for lower care, which personally I find atrocious and as though I've had dirt kicked in my face.

I have worked since I was 16, on and off for the local government and have volunteered for my local community (as well as finding time for A levels and MCAS qualifications). I have been self-employed (briefly) as a graphic designer when I was 18-20, however my health got the better of me and had to stop, as there was too much stress and I was physically getting worse. I went back to the local gov offices doing temp jobs until I finally got a permanent position with the County Council as a Pensions Officer, in the support team helping with systems administration for the department. I have been there about 2 and half years now and I like the job (although my work load had to be reduced due to my illnesses, mood fluctuations, etc) but unfortunately I'm still deteriorating (knees, back, neck and hands mainly) and I have been signed off long term sick. That's my history in brief, my EDS, AD and preliminary Marfans diagnoses were done by Prof Rodney Grahame at UCL with my Anxiety and Bipolar II, this september by Dr Bansal at the local psychiatric centre here in town (after many cancellations and referrals over the space of about 5 years).

I have been off sick now nearly half a year and obviously as my SSP ran out many moons ago (thanks to my abysmal sickness record) I have been claiming ESA. Last month, I think it was 11th October, I had a medical with ATOS. This medical was terrible, which consisted of a "doctor" sitting at a desk, tapping away slowly at a computer. She did some very strange tests to see how I can move (which, as you know from your own experiences, is extreme!) however, I was forced to perform certain things or be marked as "refusal to co-operate" this included bending at the knees and reaching above my head. Both actions caused me great discomfort (extreme pain from the knees, as they're so loose now they have no strength in them at all. As well as tachycardia from reaching thanks to AD) and when I got home, a panic attack. However, on receipt of my results, I scored 0. So even with crutches I can "comfortably walk 200m", with my anxiety and bipolar "cope with difficult and stressful situations and meeting new people", but I could go line by line through the report with how it's wrong. The sad thing is, I had already anticipated this from what I had heard previously about ATOS.

The most shocking thing I found, was when I was on the phone to DWP to ask about appealing, when I explained "I have received my ATOS medical report" the lady on the end of the phone asked for my address to send out the appeal forms without me asking for them. My current receipt of ESA is now unknown (I should be receiving it this monday, but according to the letter, it's been stopped) however, the lady on the phone at DWP said everything was still fine, so I'm confused. 

I'm now at a point in time where I'll be at the Royal National Orthopaedic Hospital, Stanmore, for most of December (from 6th to 24th) with only DLA care component as my source of income as my wages have run out and I obviously can't rely on ESA. Luckily, I live with my parents still (seeing as there's a lot of things I can't do anymore, I need someone with me pretty much all the time), however, as my Dad is out of work thanks to sciatica and my mum is, like me a community volunteer (she also has to take up my portion now as well as I'm too ill) we have practically nothing as far as income as all the benefits Dad receives go toward rent and council tax (and the benefits are due to go down, if I understand things right). So we're truly stuck and all these tests and hoops I have to jump through to prove that I am ill are wearing me down. My Bipolar feels more like Major Depression as I haven't had a mania episode for a while now.

The main problem is, I'm very cynical and very sarcastic, so I tend not to let others know that things are as bad as they are and everything I say seems to be taken as a joke. This whole ordeal which has been non-stop now for as long as I can remember is making me feel completely worthless and as though I don't deserve to live in this country. I can just about cope living day to day with my problems now, I can't consider working (no matter how many times I'm told I'm "too young to stop working" like that'll magically change things) let alone have hobbies or things to enjoy and even if I did, I can't afford them now on £75.80 (or whatever it is now) a month. Luckily, I have been saving here and there, but it won't last long seeing as I have a credit card to pay off...