It has been a busy few months for me since I had last had the spoons and time to blog.
I was very fortunate in that I not only received a wheelchair from the NHS/Westmark quite a bit more swiftly than I had feared, but was actually able to receive a much better, self-propellable one from a lovely friend who no longer needed it in England. It was transported up to me through the good offices of two other equally lovely friends who were visiting family in the area. It reminded me once again the amazing resource that a friend network is, and how much I have to fight to keep mine. I am now in the process of returning the original chair to the NHS.
During those months, I made the decision not to pursue my PIP claim, and not fill in my evidence form before the deadline.
There were a number of different reasons for this – I have been told by professionals that documentary evidence is usually needed, and the thought of having to chase my GP for a report, and quite possibly pay, and to pay what might have needed to be quite a substantial amount to my lovely private pain management physio for a report, was not particularly helpful. I was also doing freelance copywriting, copy editing and proofing through an online agency called Upwork to try to make ends meet, and the time and spoons necessary to pursue the PIP claim properly were badly impacting on the time and spoons I had available for working.
These were the reasons I was happy to give to my family and friends, and even hold to myself, for why I was not pursuing it. Beyond that, however, and probably ultimately having more influence on my decision, there were other factors which were harder to talk about.
The first of all is that, in addition to the physical disabilities from my EDS, I also suffer from MH problems – namely Major Depressive Disorder, General Anxiety Disorder, and ADD. The GAD is usually under pretty good control with Venlafaxine, but the experience of the DWP texting and phoning me about the PIP claim was already setting it off badly. Put bluntly – I had lived with serious anxiety over a long sustained period before, while my work were responding badly to my disabilities, and it frankly scares the shit out of me. When it is bad, it takes over my life. It stops me sleeping, it stops me eating, it stops me enjoying anything, it robs me of my ability to work, or even think straight, and it makes me a terrible person to live with. It makes my husband’s life as well as mine a living hell.
The thought of being beholden to the DWP – actually dependent on them – scared the shit out of me. I have too many disabled friends who are dependent on them for their ability to live, and their lives are not their own. They are, at any moment, subject to payments being cut for utterly ridiculous reasons that often take a long, long time to sort out, and sometimes cannot be sorted out at all, for utterly arbitrary reasons. Basically I knew that being dependent on them would mean that I would be giving Anxiety – that harrying, needle-toothed monster – a key to my door again, and I would not be able to shut it away. My life would not be my own, or under my own control, and that hit my pride too. That may sound ridiculous, but personal dignity should not be counted as a luxury. It was bad enough being dependent on my parents or my husband, but at least they not only love me, but are my own people. Our lives are deeply interconnected in webs of love and debt and caring that mean that we rescue each other, take care of each other and hold each other all the time – even me, even now. It did not feel the same as being dependent on an external agency that has given ample reason to believe that it wants all disabled people dead in a ditch somewhere, and it did not take my dignity from me in the way that I feared being dependant on the DWP might.
Another rather serious factor was the fact that my brain sabotages me on a regular basis by failing to believe that I am actually ill. No matter that I have a letter of diagnosis from an esteemed geneticist certifying that I have EDS (HV) and the Fragile X Premutation (in addition to my diagnoses from my psychiatrist of MDD, GAD and ADD), my brain is fond of telling me that those are worth nothing. That I am in fact making up all the pain, exhaustion, nausea and dizziness, milking the diagnoses, just too lazy to walk places using my crutches, and taking the excuse to spend most of my day on the couch with hot water bottles at my back and neck. Thus, of course, that I would go for the PIP medical, and they would immediately refuse me.
I would like to reassure the reader that I am aware of the things my brain does that are harmful to me, and that I do have some coping mechanisms in place to try to limit the damage it can cause. These have been cobbled together from my experiences of Being Me, and thus they work better at some times than others. The other night, for example, when my brain insisted that I was just being lazy in waiting for a taxi home and could walk perfectly well to the nearby station with my crutches, they did not kick in, and therefore I was picked up, dizzy with fatigue and close to weeping in pain, from the station by my husband, and had to spend the rest of the evening horizontal, feeling nauseous and shuddering with pain even on my heaviest painkillers. I am still in quite severe pain in my knees, shoulders, upper back, lower back and wrists from having done this, three days later. On that particular occasion, they did not work very well. But I do now have that experience to learn from going forward, which will hopefully allow me to improve those coping mechanisms in future.
To an extent, my decision not to pursue my application for PIP falls under these coping mechanisms. I was aware of how badly I would react psychologically if I am turned down for PIP – which, looking at the statistics, is more likely than not. I have the guidance of my experience of the time it took me to get a diagnosis of EDS, which was nearly two years of my GP telling me that I in fact was suffering somatic pain as a symptom of depression. I had to change GP and do a significant amount of personal research before I even knew where I could request an onward referral to to eventually access the correct diagnosis, and more still to be able to access the correct services for help. I know the psychological effect it had on me every time I went to seek help and was told essentially that I was lying, overreacting and making things up. It also echoed my experiences of decades of teachers and bosses regarding what I now know are symptoms of my ADD – it is unfortunate, but such things leave scars. I knew from experience how much it would devastate me, how much self-doubt it would cause, and how much that would enable symptoms of my anxiety and depression to start bothering me again – which in turn would sap my energy and ability to work and recover!
Thus, not applying was a psychological defence mechanism of a kind. Perhaps not a great one, but it was one with a certain inorexable utility. Altogether, along with all the other reasons, it did add up to enough to prevent me from making the application. Instead, I pushed myself to take on more freelance work that I could do from my couch and bed to try to make up enough money to manage on.
And of course I am very angry at myself about this fact. Primarily because I know it is a DWP tactic. They make it very difficult to apply for any form of social security. The public logic of this is that that difficulty will discourage “timewasters” and “fakers”. This, of course, does not apply terribly well when the benefit in question is designed for vulnerable people, including people with MH issues, and of course the DWP have been made aware of this by multiple charities and advocacy groups, but choose to ignore it. It works well for them if we are too ill and too afraid to apply for and achieve payment of benefit. I am angry at myself for giving in to that form of pressure. Some days I hate myself for it. But in strict terms of cost-benefit analysis – how much time and energy it would have taken to even put the application, including the psychological fallout from the impact of filling out the form – versus the time I could and did put into my freelance work, getting myself referred to the rheumatology physiotherapy service, and into simple recovery – I honestly cannot say it was the wrong one.
And this angers me more than I can say. How can it ever be correct that the simple process of applying for a benefit designed for the most vulnerable people is so taxing – and so expensive – that it actively damages someone’s health more than (admittedly flexible and part-time) working does and costs them money they do not have?
It has been a busy few months for me since I had last had the spoons and time to blog.