I think I'm one of those people that's a bit more emotionally fragile and maybe if I'd been taught to be more resilient it might have helped. I've done a lot of work in the area of children and young people's mental health. I've worked on many projects including the CYP Improving Access to Psychological Initiative as well as speaking in parliament, working with YoungMinds and Beat and the Samaritan's to develop their DEAL project which gives resources to schools to help young people to become more resilient - a project that I could have really benefited from it it was available when I was younger.
Even now I lack the resilience to deal with the emotional aspect of being chronically ill. Some days I am okay with the fact that I am chronically ill, other days I really struggle with being chronically ill. Heck, just being in constant pain affects my mood let alone everything else.
Even with medication and other strategies my symptoms are still very debilitating and relentless and in terms of other treatments they are very few options. Some of these options are very difficult to access which I feel adds to the emotional aspect of being chronically ill as I'm not just dealing with the symptoms but I'm dealing with the frustration in struggling to get specialist support. On top of that there is also all the 'medical admin' that I have to do: emails, phone calls, meetings, paperwork, filing etc which is very time-consuming, overwhelming and tiresome.
This year I've tried really hard to reduce the medicalisation of my life. When you're chronically ill it's a full-time job. Sometimes I become 'sick and tired of being sick and tired' and I don't want to be ill anymore. Being ill is a full time job and over time you become lost within an existence of illness and you lose yourself.
My friend Ruth one gave this analogy "your life is like a piece of cake and you have ten portions, but only one portion is your health." It's true, being ill is not all I am, it's just part of my life, but sometimes it feels that way. But I'm trying to reclaim myself and make space in my life for the other nine portions of myself (easier said than done some days).
Then there is the comments of 'oh but you don't look sick' - but what should illness and disability look like? On the day of writing this part of the post I got asked by my social worker why I had an advocate and I explained; her response was something along the lines of "but you come across so confident and able to communicate well". I need my advocate because at time I feel voiceless or I'm not being heard, or recently I've struggled with getting my medications and prescriptions organised and I just reached the end of my rope with the pharmacy and my GP practise and I needed someone to help me.
Another recent example was that recently I've been going through a pain flare. This left me a emotional rock bottom, but the mental health crisis worker said should couldn't help me as the reason for me hitting rock bottom what a physical health matter (?!). This left me feeling even more alone as at present with this coronavirus situation much of my professional support network is on hold or vastly reduced down so I'm muddling through much of things on my own and since leaving hospital it's been a struggle.
I often use the analogy of a duck where on the surface I'm gliding along living my life, but underneath I'm paddling like mad just to stay afloat.
Living with chronic health problems with a lot of unpredictabilities my life is riddled with anxiety and worry. When will my next seizure be? What will I next stand up and faint? Will I have a fall next time I go to the bathroom? Will I be able to get out of bed? How much worse will the pain get? And so on and on with these thoughts and worries. It makes hard just to get on with life.
It takes a knock on my confidence and independence too. I feel like I can't just have a "normal" life.
I feel the emotional aspects of physical illnesses and how this affects people like myself's mental health often gets overlooked. Healthcare focuses on the medical model: concentrating on your symptoms etc yet they forget to ask you how you are and how you're coping or not coping as may be the case.
There's also the isolation. Being mostly housebound I don't get to see a wide range of people. Isolation in itself has been proven to be linked to people's mental health.
I suppose to bring this blog post to an end my main point is there is so many emotional elements (and there are more than what I've just mentioned here) that feed into being chronically ill and that physical health and mental health go hand-in-hand. Care needs to follow more of a biopsychosocial model to meet the whole needs of individuals like myself so we are well not just physically, but emotionally and socially too.