There’s a lot I need to get off my chest right now which has been simmering away in my mind, unspoken, unshared, for years. It’s time to share it all. By the time you’ve finished reading this article, you will understand me as well as I understand myself. That’s how honest I’m going to be.
I had a call yesterday from the council. The accommodation in London where I live is supported by my local Mind (a mental health charity here in the UK), which means that the council, who oversee housing in the borough, pay Mind to support me. This support normally takes the form of a monthly meeting with a support worker who focuses on helping me with any mental health concerns (plus any housing concerns).
Inevitably, this call from the council comes once a year, and I always dread it. Allow me to explain a little about why…
My rent is paid (by me) to a housing association (my landlord). Normally the rent and bills would be covered by state benefits for someone in my situation, but I inherited some money from my grandparents which meant I had to come off benefits. A lot of people try to play the system and if they inherit money they will conceal it from the government, but that’s not my style at all. I like to keep a clear conscience and be able to sleep at night, so I declared the inheritance the moment I got it. The money I inherited is now running out, so within the next few months I will need to either be working or will have to go through the process of attempting to claim state benefits again, so I can afford to pay my rent and living costs.
There’s part of me that would love to work, as I’m a motivated person and earning money is always very satisfying, but there are some health reasons why I don’t think I can work, and I’m not sure whether I will ever be able to work again. I have a serious problem with my heart which I have been unable to get a diagnosis for, despite going to the hospital Accident & Emergency department on one occasion a few months ago when I was experiencing severe palpitations. I also had some tests done, including a 24 hour ECG, on another occasion.
It took a lot of courage for me to seek medical help for my heart, as the thought of operations has always terrified me. In any case, the doctors who I spoke with didn’t take my concerns particularly seriously, and rather than persisting with trying to get a diagnosis, I gave up. The reason why I gave up is because my experience with the National Health Service (NHS) was terrible – my local hospital feels more like a torture house than a place of recovery. Staff are terribly overworked (and, in my experience, very unprofessional in many cases), departments are underfunded, and due to numerous bad experiences I honestly don’t trust doctors to give me a correct diagnosis, and I certainly wouldn’t trust them to operate on my heart. A lot of people exercise a kind of blind faith in the medical profession, but I’ve witnessed too many horrors to be so naive. Of course, I’m not saying all doctors are bad, and many health professionals are very well-intentioned and do amazing work. But things in London at the moment are not good at all.
As well as my problems with my heart, I have a diagnosis of schizoaffective disorder (a combination of bipolar disorder and schizophrenia). I believe this is an appropriate diagnosis that reflects the symptoms I experience when I’m unwell accurately. Some readers will be shocked to learn of this, as I have been told I come across as very ‘normal’, but believe me, I’ve had some pretty intense episodes of mental illness. And despite the fact I haven’t been admitted to hospital for around 5 years, I experience residual psychosis on a daily basis, which manifests as paranoia, anxiety, minor delusions, and minor obsessive compulsive disorder. These symptoms are another reason why working could be problematic.
Despite my mental health problems, which are not insignificant, I’m fortunate to be very capable – I have had a good education and have good job experience and am able to function pretty well the majority of the time. Medication (which I take in the form of a monthly injection, as well as some tablets) seems to play a role in keeping me from experiencing the more severe effects of psychosis. The trouble is, when I take on stress, as would inevitably happen were I to start working, it aggravates my heart condition (I start to get severe palpitations), and I also get stress-related panic attacks. So, realistically, as much as I would like to, I don’t think I can work.
In a country where doctors are treated as saints, how am I supposed to make the council understand that I don’t trust the NHS to sort out my heart problems? To be entitled to government support I need to justify why I am unable to work, but I fear the council would not take my concerns about the state of the NHS seriously.
The lady from the council who phoned me yesterday wanted to set up a meeting with myself, her, and my support worker from Mind next week for a review of the mental health support I’m getting and my accommodation. We have a date and time in the diary (next Tuesday at 11am). I love where I live, both the flat itself and the local area, but there’s a certain amount of confusion over whether I can stay here long-term. When I first moved in, I was told it was permanent accommodation, but in my annual reviews with the council they are always trying to ‘work towards move-on’. It’s really confusing because, from what I can gather, if they ‘move me on’ it will just be to similar accommodation with another housing association, only without the support from Mind. I have tried to insist that this would be an unnecessary upheaval, and that it would make more sense for me to simply stay here (with or without the support from Mind). I’m a good tenant, I have paid my rent on time every month without exception, and I don’t bother anyone. It’s very unsettling feeling that I may have to move out at any time.
What complicates matters is that Mind have a contractual arrangement with the housing association. As I understand the situation, a certain number of flats are allocated to Mind by the housing association for people with mental health problems. So Mind have an interest in the flat where I live. I would like to just have a normal tenancy with the housing association, but if I were to do that Mind would effectively lose one of their properties, which they are reluctant to do. I have discussed with the housing manager at Mind the possibility of signing a new contract with the housing association that would give me a more secure tenancy, but if this were to happen he would want Mind to be allocated an alternative property to avoid the charity losing out, which I do understand (Mind are a very caring bunch and I do believe they work in the best interests of their clients). The housing manager at Mind tried talking to the housing association about this but they were unresponsive.
The only alternative to this housing muddle that I can envisage is that I enter full-time employment and move to a cheaper part of the world, as the area of London in which I live has really expensive rent. It would be incredibly difficult for me to rent privately anywhere, though, as landlords tend to steer well clear of people who have mental health problems (I have personally been discriminated against because of this), and as I have been out of work since 2009 there’s a long gap in my employment record to try to justify to any prospective landlords.
If I were to start work I could look into the possibility of putting a deposit down on a property and getting a large mortgage, but that would tie me into working full-time for the next 25 years at least, and seeing as I’ve had four psychiatric hospital admissions (being sectioned each time) since 2007, and have the aforementioned problems with my heart, I doubt I could even get a mortgage, let alone commit to paying one off for 25 years.
Despite my somewhat turbulent mental health journey, I have been blessed with an abundance of passions, interests, and skills. I love writing and have written two books and am working on a third book at the moment. The process of writing and self-publishing my third book is going really well and I believe the book has a lot of potential. I have studied philosophy and theology in some depth, and have spent a lot of time pondering and researching the big questions surrounding our existence. I believe I have something genuinely worthwhile to contribute to these fields. It seems to me that God gives everyone dreams and ambitions, and that every human life has a purpose, and I feel that writing about these subjects and sharing my insights into the nature of reality is my life’s purpose – it excites me, inspires me, motivates me, and gives me a reason to get out of bed in the morning.
The final thing I want to write about in this post is not easy to discuss, but very important. I believe in God. I pray a lot about my circumstances and God talks to me (I wrote a blog post entitled Hearing Voices or Hearing God? which you can read if you’d like to know more about this experience). I make sure I have some quality prayer time every Sunday, and I ask God regularly if I should get a job, if I should start earning money, if I should move out, etc, and God promises me that I’m going to stay where I am and am not going to work again. Now, how am I supposed to explain that to the council? The council may offer me alternative accommodation, which to many people would seem positive, but the fact that God has spoken to me about this and promised me I’m staying where I am makes me feel I must trust what God is telling me and not pursue alternative accommodation, even if I’m offered it. I feel that having a conversation with God is a very private and personal thing and I don’t really feel like explaining it to anyone I don’t know really well, including people from the council, who as far as I know might be atheists and therefore would attribute every experience of this type to chemical imbalances in the brain.
All of the things I’ve written about in this post have been on my mind for the last few years and I have felt unable to talk about them with anyone (except God). If there are any atheists reading this, please know that there are very many people who hear the voice of God, even if there is a certain stigma around admitting it. I have been to churches where people talk very openly about conversations they have had with God and the things God has told them. For those who haven’t had this experience and don’t believe there is a God who communicates with humans, I understand – I have tremendous respect for atheists because I was one myself for many years.
So there we have it. I’ve come clean with you, and now you know 100% of what I’m currently battling with in my life. I know that compared to some people I’m incredibly fortunate and have a lot of positives in my life. I don’t take my abundant blessings for granted. I’ve had all of this weighing on my mind for a long time so felt it was about time I opened up and shared it. I believe in honesty, even when it’s tough.
If you’ve read the entirety of this post, thank you very much indeed. You’re welcome to leave any thoughts in the comments below, or just hit the like button to let me know you’re not going to disown me after reading all this! I’m very grateful for your time. Peace and blessings, Steven x