I had to take a taxi for this appointment, and luckily went with a company who actually sent the taxi on time! And the driver wasn't rude (a rarity round here). Again, I didn't have a clue what I wanted to say in the appointment, but I know the psychologist is lovely and she makes me feel at ease. I'd been given some 'homework' to do during the 10 days I would have the house to myself. I had to make sure I was doing 'something' each day; including something I enjoy. During the 2 week gap between appointments, I also had a work related activity group (esa) meeting. I may go into this in more detail.
We talked through how I'd been coping, how I was feeling, what I'd been up to. She seemed pleased that I'd been trying to keep myself busy, although it was established that I've been pushing myself too far again. Pacing is so hard to do when you just want to walk that bit further, do that bit more, last that bit longer. I have a habit of pushing that bit too much and going from suitably tired to absolutely done in and in need of days of rest.
We spoke about my depression, having the suicidal thoughts etc. I've been trying not to think about it to be honest. Again, I'm constantly looking for distractions. I have a VERY hard time relaxing because my mind seems to constantly be 'on'. Always drifting to thoughts; not necessarily healthy ones either. I said that one of my goals was being able to relax and not be worried about having these thoughts, and to not feel guilty for taking time out for 'me'. I always feel like I have to be 'doing' something (unless I should be sleeping at night of course).
I then mentioned about how I'd noticed my anxiety more, but it didn't seem to be irrational anxiety because it was because of something. My work related activity meetings. I'm still reluctant to talk about anything to do with benefits on a public blog but it's relevant to both my physical and mental health (which is of course, what this blog is 99.999% about!). It's just that every letter comes with threats of sanctioning if you do this, that and the other or don't do this, that or the other. It's like you're on probation or something. You feel as if all eyes are on you, watching your every move (making sure you're not doing more than you say you can do), judging everything, spotting any opportunity to give you the big 'S' (sanction). My last work related meeting was a work programme thingy. The guy on the phone (when booking that appointment) had spoken so quickly, expecting my every answer to be 'no problem', that I hadn't heard his question about extra provisions, disability access etc etc etc. I mean, you assume that any programmes an esa claimant would be put on, is only for an esa claimant. And in the majority of cases (if I'm not mistaken), there will be access issues. You expect the place to be on the ground (or at least 1st) floor of a building. When I got the appointment letter through, I had such a shock. It was to be an 'induction' and was on the 3rd floor of the building. My mum rang the place for me (Have I spoken about this in the last post? Not sure) and they said there was a lift. What they failed to say was that the lift was key operated and I'd have to let a member of staff know when I was buzzed in. So dad took me to the appointment, we were buzzed in and then faced with the lift. I was wondering why the button looked so strange and didn't work! There were no phones or anything so we were stuck. Either go home and get sanctioned for not turning up, or risk my own health by struggling up the stairs.
I'm sure you can guess which option I took and it took a long time to recover from it. 3 flights of stairs to me is probably like climbing a huge mountain for an able bodied person. Every step set off my painful hip, my feet burned, my back hurt like hell, I fell a few times, I was sweating profusely (yum), anxiety was ridiculous, but I managed it. Now let me make this PERFECTLY CLEAR to anyone judging me for climbing 3 flights of stairs when I say I usually can only make 1. This DOES NOT MEAN that I can manage 3 flights of stairs safely, reliably, repeatedly and within a reasonable amount of time. This is the kind of thing that drains my spoons, sets off major flares, is very risky to my physical health and is only something I could do once in a blue moon when there is absolutely no other option. Anyway, I got through the doors and signed in. Had a few funny looks from people (who I later found out were jsa claimants, not esa ones????) but this was probably because of the effect taking these stairs had on me. Straight after this, we were whisked into a meeting room and given a group presentation. I wasn't entirely sure what was going on but what I did know was that the presenter was talking about jobs and we were in a group situation. This was a very very high stress situation for me. My overactive bladder means group situations are a no go and I am in no way ready for working yet, so of course I am not thinking about the kind of work I want to do. My physical health is the main reason, but my mental health also plays a big part. Things which shouldn't be stressful generally, are extremely stress inducing for me. And what job is stress free? Long story short, I ended up breaking down, being taken out the room, meeting my personal advisor, filling in lots of paperwork (my hands were KILLING ME), talking about all my lovely little symptoms within earshot of everyone around me. I also had to set job goals, I mean wtf? I'm here to be supported, not to be pushed into work when I should be focusing on my health? It's not that I don't know HOW to look for work, it's that I'm TOO ILL for work. It was HORRIBLE. After that I decided I should really appeal. So that's where I'm at now.
I explained all this to the psychologist and she said she completely understood why I was so anxious, I was even showing my anxiety right there and then (and usually I hide all my illnesses extremely well). She was furious that I was forced to walk up stairs and even said that if she'd known, she would've rang up the office manager and insisted I was allowed to go home. How nice of her! :) It's so great to have someone (in a medical profession) on my side. She understands that I can't work yet and it'll probably be a while before I'm in a situation where it's a realistic goal. It's so great to have a professional whose main focus isn't trying to get me back into work ASAP. It surprises me as well. I won't go into detail with the rest of the appointment, but her (wonderful :) ) attitude towards this got me thinking about how important the concept of being in employment seems to be in our country (in our culture even)?
I'm not going to go off into some sort of capitalism rant. I won't even go that political but I will mention the Conservative slogan which seems to be everywhere: "For Hardworking People".
Are we only 'hardworking' when we are in employment? Are we not worth having human rights otherwise? You see, in this country, it seems that our 'worth' is measured by the things we achieve. And valid 'achievements' are always career oriented whether it be directly or indirectly. It seems (and isn't my view at all, let me just say), that you only have real 'worth' if you are working or studying. Your level of success seems to be measured by what degree/s you've done, what subject they were in, the grades you achieved, what work experience you've done, your employment history, how much you earn, how far up the career ladder you are. It seems to be socially unacceptable that you may not be working or studying (for whatever reason). I have had to really think about achievements. Beforehand, I did have this view about myself. That my only valid achievements would be education or work based. My goals would be:
- Get a psychology degree
- Get a masters degree in Clinical Psychology
- Get a job in an office, build up experience
- Get into an NHS job
- Get mental health, clinical experience
- Get a Clinical Psychology Doctorate
- Do my Psychology training
- Become a Clinical Psychologist
- Get married
- Own a house
- Have children
- Build up a respectable pension
Pretty ambitious huh? And only 2 or 3 of them aren't to do with studying or working. Since becoming chronically ill, my achievements have to be smaller but still something I can feel proud I achieved. I had to adjust my whole perception of 'achievement'. My goals are more about health and independence:
- Walk to a shop by myself
- Meet up with friends more often (maybe once a week even?)
- Take a longer journey by myself
- Get onto medication which helps my symptoms
- Take more control of my mental health
- Be well enough to cope with a relationship again
- Strengthen my leg muscles enough that I don't have to walk with a stick anymore (not sure how this one will pan out as my fibro is so unpredictable)
When it comes to illness and/or disability, the focus doesn't appear to be on your health and making sure you're getting the support you can. It's about 'supporting' you into getting into work as soon as possible. There is so much pressure to get well that it makes you feel guilty that you're not getting well (or is it just me?). I certainly felt that way at the wrag meeting. I suppose the clue is in the name but still, the pressure is very high.
Thank you for sharing this. While I am currently in the 'support group' for ESA, I am in constant fear they will change their minds and decide I am suddenly ready to look for work. To be honest I try not to think about it as it causes a lot of stress and anxiety, which of course affects my physical health (as I'm sure you know). For the time being I am managing, and possibly even improving, but I know it's because I don't have many stressful situations to deal with. The hardest part of all of this is feeling like a failure because I haven't got a job and I'm not earning my own money. I know it's not my fault I can't do these things, but as you said, society expectations imply that if you can't do them you should feel guilty for failing and simply try harder (and of course, for those of us with chronic disabilities 'trying harder' can lead to making our health worse.
ReplyDeleteSorry this was a little more ranty than I planned. I just wanted to say I understand and am grateful you decided to share your experiences.