This morning, I was given the opportunity to share part of my stroy with around 30 professionals from various mental health and learning disability organisations in York as part of The Hut’s professionals event.
It’s quite long, but if you’d like to read my talk, here it is:
When I first arrived at The Hut, I had hit a bit of a low point in my life. After the death of my Mum in October 2015 following a long illness, I’d taken a Leave of Absence from university, originally until January 2016 but when January rolled around, I wasn’t in a position to return so my Leave of Absence was extended. Unfortunately, this meant that I also had to move out of halls, take a break from my job which was tied to the university, and stop seeing the counsellor who I’d been seeing ever since Mum was diagnosed 2 years previously.
I was effectively thrown into the “real world” with a vastly reduced support network, pretty naff mental health, and no real plan going forward other than to try and get better.
I didn’t really know much about services in York. I knew what was available to uni students, but that’s a very different picture to what’s available to non-uni students. Having run World Mental Health Day at the uni for a couple of years, I had a vague idea about organisations in York, but I didn’t know what was available to me personally. Originally I’m from a village in the middle of Leeds, York and Harrogate. Through volunteering, I knew quite a lot about services in Leeds and having gone through CAMHS in Harrogate, I had a fair idea about services available there, but with York I was clueless. I’d been pretty ‘well’ when I started uni, and once you’re there you get so wrapped up in the uni bubble that you often forget about the wider city, so once I‘d taken leave I was utterly lost.
My church pointed me to Castlegate who were fantastic and gave me a lot of time. They helped me find somewhere to live and apply for PIP. I was, and still am, supported by a fantastic GP who’s pretty much been a lifesaver. But at the point when I first arrived at The Hut, I was hardly leaving the house except for appointments, I felt completely useless with no education or work for the first time since I was about 4. I was lonely and low. I had no self-worth and just felt like a burden. I desperately wanted to be a productive member of society but that felt like a distant dream when it was taking hours to get dressed, more hours to leave the house, and if I did manage to get up and out, it would frequently result in crying outbursts. I couldn’t sleep without tablets because closing my eyes prompted flashbacks to a very poorly Mum. I couldn’t be in a room with others without panicking and spacing out.
I was struggling with my family – Dad wanted me to move back home, my brothers appeared to be completely ignoring grief, and my grandad was emailing me regularly asking if I’d got a job/what I was up to. I also had no idea how to interact with people my own age, or anyone really. I’d spent the previous two years in and out of hospital with Mum, going backwards and forwards between uni and home, discussing blood results, compression socks, and treatment side effects, and coming to grips with illness and death. Talking about Britain’s Got Talent or who got with who at a club night felt trivial. Furthermore, none of my friends had ever really encountered grief, certainly not to the extent of losing someone as close as a parent, so they couldn’t really understand what I was going through.
I was living life from appointment to appointment. My CPN gave me a Healthwatch booklet of services at one of my appointments. I went through and emailed any organisation who seemed vaguely relevant. York Mind and The Hut were the ones that stuck.
Arriving at The Hut was terrifying. I’d emailed Emma and arranged a time to meet one afternoon. I was late because I’d yet again struggled to get up and out, and then I’d got lost trying to find the building. I walked in the door and nearly bolted because there were quite a few people in the room, but Emma came out and showed me into the back room which was quieter.
We spoke for quite a long time which was a miracle in itself given where I was in life. She understood the grief thing, which was incredibly comforting. She also got the struggling to get out of the house thing and various other challenges I was facing. She was just understanding about everything.
I was really clear that I didn’t want to volunteer. Using services instead of volunteering for them was an alien concept to me, but I didn’t want to let people down on the days that I couldn’t get out, so I started as a member.
The thing I remember from that first meeting is that Emma saw me as a person, not as a grieving daughter or a service user. She wasn’t interested in ‘symptoms’ but more in who I was, what I wanted to get out of coming to The Hut, and how they could help me. At that meeting she saw skills and talents in me that I couldn’t see in myself. I got home and cried, completely overwhelmed by the idea that I could be useful, that I had some talents and some worth, and that I wasn’t just a burden and a drain on resources. I text one of my friends to tell her that someone saw some skills in me and how overwhelming it was and she replied telling me I was a muppet and it’s what she’d been trying to tell me forever, I just couldn’t see or accept it!
I slowly started coming to The Hut more and began to get to know some of the members. B is a similar age to my Dad, and his wife died at the same time as Mum. We talk openly about loss, but also about his time farming in New Zealand and his frequent trips to the pub. S is a similar age to me, he always welcomes me with a smile. We talk quite a lot, navigating the complexity that is life and social situations. There are other members who know me and chat to me on a daily basis, it’s like a little family in many ways.
A couple of months ago, I moved from being a member to becoming a volunteer, but rather than volunteering in the main room with Jonny and most of the other volunteers, I’m an ‘Emma volunteer’. In the last few months, I’ve redone the website, rebranded everything and redone the business cards and flyers, worked on developing and improving the social media, written the volunteer handbook, helped to plan today’s event, and done some other stuff I’ve probably forgotten about!
Emma’s given me the time and space to stay involved at The Hut and work on different bits and bobs, sometimes from home and sometimes coming in, depending on where I’m at. Coming here more regularly has helped me to keep getting out and leaving the house. It’s given me a sense of purpose and routine. It’s helped me to start talking to people again about something which isn’t illness or death. Emma and Jonny (and many of the members and volunteers) are always there if you need to chat about something, and are very perceptive if you’re not quite yourself, but they’re also there if you just want some time to be quiet or chill out a bit.
Things with my family are much better than they were, and coming here has helped with that, too. Emma was one of the people who helped me develop ways to talk to my granddad, and to some extent my Dad, navigating this whole grief-and-family thing which unfortunately, nobody provides you with a map for. Having a regular place that I was coming to also helped with the ‘so what are you doing with your life?’ questions which people love to throw at people my age.
Filling my time and talking to others has helped me to stop dwelling on my life and what is or isn’t going on in it, and start to re-engage with others. It’s helped me to reintegrate with the world and relearn all the social bits that you lose when someone close to you is terminally ill. It’s given me some confidence back, it’s not at where it was pre-Mum’s-illness, and there’s a long way to go with many things, but I feel able to get up, get out, and speak to people now which might not sound like a lot but is massive to me. I’ve got a job now, too! I’m starting at the Discovery Hub at York St. John soon, and I don’t think I’d even have had the confidence to fill in the application without coming here.
Being 22 and needing mental health services is odd. You’re not young enough for child and adolescent services, but adults services aren’t all that used to dealing with someone in their early twenties. This is exacerbated by the fact that most people who need services at that age are in uni, so uni pick up a lot of people before they even reach NHS services. Most people that aren’t well enough to be at uni, will remain or return to their original home, so they will never go looking for services in York.
Having a parent die at my age also confuses a lot of people, and specialised services to support someone in my position simply don’t exist. Most people don’t have a parent die until they’re much older and more settled in life. Either that or their parent dies when they’re very young, so they have child bereavement services, school, and other family members to turn to. People don’t know what to say or how to talk to you when you become motherless aged 21, and having a parent die at this age throws up unique age-related challenges.
Having mental health problems and being bereaved seems to only complicate things further, with different services defining what you can and cannot speak about while seeing them, even though the two things can be intertwined.
I blog about my experiences and through this I’ve found a few other people in a similar position to me, not loads but a couple. I know one other person who lives in York, is my age, and has recently found out that her Mum is terminally ill, and it frustrates me that services to support her just don’t exist. There are Young Adult Carers, who have been great, but it’s slightly different caring for a chronically ill family member and caring for a terminally ill family member.
At the time I arrived at The Hut, I didn’t need specialist bereavement support or anything like that, I didn’t want to talk about Mum’s death, my family and how they were coping, or dredge up memories of Mum being ill. I needed a purpose. I needed help to get my life back. I didn’t and don’t want to return to the person I was pre-Mum’s-illness, because too much has changed, but I did want to begin to find an identity again. An identity that wasn’t simply Mum’s daughter or the person who’s Mum died.
The Hut has helped me find that and I’m really excited to see it grow and develop and help more and more people.