Over recent years the benefits system for those with health problems have come into focus many times. The way conditions are being assessed are getting more and more difficult for those applying, and many peoples benefits are being reduced or cut.
I have been on the receiving end of these assessments, and they have been extremely traumatic experiences. I have often come out of those appointments feeling angry, upset and even embarrassed.
With an illness such has Ehlers Danlos Syndrome, one of the major difficulties is that the assessors have rarely even heard of it, and that we all look so well. In my last assessment for PIP the assessor turned round to me and even told me that ‘Ehlers Danlos Syndrome is just a fancy name for joint hyper mobility”. This is totally wrong, and it was said in such a way that I was made to feel like I was lying my way onto sickness benefits.
EDS Hypermobility-Type is the diagnosis used when the joint pain and hyper mobility coincides with other comorbidities. These conditions include (but aren’t limited to) illnesses such as POTS (autonomic dysfunction), digestive conditions such as gastroparesis and dysmotility, urinary conditions and many more that often impact hugely on a persons life. NOT just because we are attention seeking and trying to make the illness look worse then it is.
Being an almost invisible illness, and the fact it makes your joint too mobile make getting a PIP assessment even more difficult. The questions surround things like range of movement: and funnily enough they only focus on people with a severely small range of movement, not on people that move too much. Things like – can you put your hands behind your back (which for the record, if a shoulder has subluxed the answer is no) don’t take into account the fact you can do these movements too easily, and often cause pain and damage in the process. Being hypermobile causes all sorts of issues that non of the benefit question take into account, an therefore it is very difficult to score points even tho these affect your day to day life endlessly.
In general the assessor was quite clearly doubtful of the issues I mentioned. He couldn’t really believe I wasn’t able to do things like prepare meals or wash regularly. He continually questioned me on how far I could ‘really’ walk, and tried to catch me out on a number of occasions – including following me out of my appointment and watching for some time just incase i danced down the corridor after it was done.
One of the worst parts of that assessment was the refusal that I had ever suffered from Anorexia. Having been on high dose steroids for some months, my weight was at its highest which I found very difficult to manage. When I and the person I was with mentioned that I often need prompting to eat still (particularly if I am low or stressed), he told me that my eating disorder was binge eating disorder – ‘your fat, you obviously binge eat’ and ‘It wasn’t anorexia was it, its binge eating disorder, you clearly eat to much’. Regardless of all of the letters he had right in front of him, the proof of my steroid dosage, and without caring about the effect that his comments could make to someone in recovery of a long standing eating disorder, he carried on pushing the point and made me feel like a big fat liar. This was also followed with the dismissal that PTSD, depression and eating disorders are all separate issues – he skipped over all 3 telling me they were the same thing.
The behaviour in that one assessment alone gave me the absolutely clear picture that disabled and ill people in this country are guilty until proven innocent. We are all labeled as ‘benefit scroungers’, and this is a view point that is handed down to everybody in this society by the government who should be looking after us.
I also had to undergo another assessment for ESA and this was no better. The woman was nice enough in the room, but after the findings were written down it was another story. The lies woven into the 20 page document were unbelievable. Ranging from her examining my range of movement (funnily enough I don’t recall this taking place) and them all being at normal range, too the fact I could walk 45 meters in one go (slowly with significant pain from my hips popping out of place several times) obviously being proof that I would have no problem ‘repeatedly mobilising 50 meters’. Apparently I ‘didn’t look in pain so does not get pain’ and ‘didn’t look tired so does not get tired’. Issues of my depression were glossed over even tho I had spent 20 minutes crying, and many activities were written in as evidence I was doing enough to be working (all of which were false). All of the things I had told her were swapped around and used against me: unless you are actually brain dead and can’t move a muscle, I suspect this is the case for everyone.
It makes me angry and sad that this is the case in our country. It is the doctors that care for us who should be able to make the decision of weather we are ‘sick enough’ to warrant sickness benefits. It is nonsensical that we should be sent to people who have no understanding of our illnesses for a decision based on one meeting. Why should we be left to feel embarrassed and upset when we are already dealing with the effects our conditions have on us day in and day out?
I came out of the ESA assessment as a ‘lucky’ one. I was awarded the basic rate, but apparently I will be totally better within 8 months or so, and therefore should be fit to work a full time job by then. I would love to know exactly how this is possible with a genetic condition like this. Pass me the magic wand and I would be only too happy to be working as a functioning member of society.