Sally's story - a story on the struggle to find support
Updated: Apr 1
We spoke to Sally who has suffered with mental ill health for most of her life, and really quite complex mental health at that. Her story centres mainly on her struggles in looking for support and instead being trapped within a system that sends her round in circles. In sharing her story, she highlights the importance of others listening and doing something to take action. There’s been a big movement in encouraging people to talk about mental health, but it is pointless if people do not listen and nothing is done about it. Read her story below.
Where it all started
Apparently as a baby, I was unsettled and didn’t sleep well and the doctors even put me on a very low dose of amitriptyline to address this. If I didn’t want someone to do something, even something like change a dirty nappy, apparently I would kick and do everything to not allow it. I’ve been in and out of the mental health system since I was 8 and I’ve experienced all sorts. I’ve seen all manner of therapists; family therapy, 1:1 therapy, and I went for assessments (for ADHD, autism and personality disorder) at High Royds hospital when that was still around. But nothing ever amounted to anything, they found traits of a variety of things but never enough to warrant a
concrete diagnosis even though I had all manner of behavioural difficulties as a child. After the age of 18, I had other therapy including a few rounds of CBT, therapists to treat agoraphobia and counselling. I’ve also been refe
rred to CMHT once or twice but they say ‘You’re doing alright,’ and reject me. My agoraphobia was so severe that I did not leave the house; only at 1 or 2am when no one else was around was when I walked around my house. Then I was terrified of buses and I didn’t get on a bus for 5 years. I felt trapped and like I was going to be sick when I was on them. Eventually I became an alcoholic and became so poorly that I caused damage to my liver. My behaviours are obsessive and I have a very addictive personality. I feel anxious most of the time and I experience panic attacks. I am a very sensitive person and my mind and my senses seem very ‘loud’ to me; so when I step outside the house, the day seems strange to me. Even leaving the house is an ordeal - things don’t come easily to me, and it’s not just a simple ‘go out of the house’, as my general mood and anxiety don’t allow that. If I’m feeling anxious, I can’t concentrate on leisure activities, even with watching TV. When I look back on my life, there have been a few points where my mental health was OK and I cherish those memories, but all the rest of it is filled with distress.
Pitfalls and blockades
It is clear I have been offered various treatments of different modalities, but the big issue is that these have been quite generic and haven’t worked for me. So it means that I am going around in circles in the system, sometimes just being offered the same therapy over and over, and going to the same people to request help. My diagnosis is depression and anxiety disorder and so I take BETA blockers and antidepressants for that, but this makes out my mental health to be much simpler than the complex state that it’s in. What may have been better for me and what I am battling for now is some sort of specific diagnosis. I think it would be a better use of resources to accurately diagnose the person and provide them the therapy most suited to that diagnosis rather than just providing generic therapy like CBT which would surely cost more in the long run. I am constantly being dissuaded from trying to get a diagnosis by my GPs, and they say that ‘being diagnosed isn’t everything…’, but it is important to me. And people are telling me what I should and should not be doing which is frustrating because it’s my life and my choice as to how I should approach this.
CBT has not been effective for me, probably because it’s probably better for more mild anxiety or depression, but for more serious illnesses, it’s like putting a plaster on a gaping wound. This just results in me experiencing the same issues and going back asking for the same help. I’m passed onto person onto the next person because they say ‘I can’t deal with this, I’ll pass her onto someone else,’. I just don’t feel supported in the system. A huge problem within the system is the lack of understanding or empathy. Some examples I can think of;
-Dad got a home visit from a doctor about me, and the doctor told him that I need a good kick up the bum.
-When I had self-harmed, I had to go to the doctor to get the wound closed up. I asked her ‘Is this going to hurt?’, and she replied ‘Not as much as what you’ve done to yourself.’
-When I was being treated for agoraphobia and not able to go out of the house, I was accused by the doctors of being out shopping. I was a teenager at this time anyway and so it was my parents that did all the shopping at this time. But because of this accusation, they refused me for a home visit.
-When I was an alcoholic and was poorly, I came out of hospital and was referred to Leeds Addiction Unit. I got more of the same here, saying ‘She seems alright, she’s not in hospital now, she’s not doing that anymore so she’s doing better,’. Apart from I wasn’t doing better in myself, I still needed that support.
My parents begged and pleaded for help when I was a child, and none was forthcoming. It shouldn’t be this difficult to get help, help that is specific to what I’m experiencing. Particularly as it’s me having to do all the chasing up and asking for help and it just makes me want to not bother. Now, from my experiences, I’m of the disposition to not even want to ask for help as when I do, I don’t get it or I am palmed off as doing OK.
Now, in this pandemic, everyone is struggling now, so they need to put more money into the system and stop just offering everyone generic therapies because otherwise this mental health crisis is going to get a whole lot worse. People are put onto huge waiting lists to access the same therapies which is a huge problem too as people are having to wait months and even years to even be assessed which doesn't even guarantee them they will get that help. People are in crisis, they need that help now, not in 6 months time. These services need funding to cope with the demand, so there’s no point just raising awareness of mental health as this just puts more people into the system and the system doesn’t have any extra resources to even deal with this.
Impacts on life
My mental health has had impacts on most areas of my life. In terms of my relationships, my partner suffers, and if I am distressed internally, I can project onto other people and be snappy towards them which strains relationships. For studying on courses, it affects my ability to write.
What helps my mental health
Reaching out and talking to people does help me release. I’ve found some peer-led support groups on Facebook too that have been good to engage with, as no one will understand more what you’re going through than finding those people that are going through a similar thing. So peer support from these sources have been useful.
The main thing that has helped me lots is my wild swimming; swimming in cold lakes. Interestingly, there are actually quite a number of people who suffer from mental ill health who attend these wild swims, and it is a very positive outlet. There’s apparently some benefits of the cold water and exercise on mental health and I would suggest reading Wim Hof around this.