I’m not certain I can even remember all of the therapy I’ve had without diving into my medical records, so you’re possibly not going to get the full picture. The purpose of this post is simply to share my experiences, which have mainly been negative.

My first therapist

I had therapy at my GP surgery when I was about 20 years old. If I remember correctly, this was because I’d cried during a GP appointment when we were talking about the miscarriage I’d had before the surgery that would likely impact my fertility. That miscarriage probably counts as a whole other trauma on its own, due to the lack of support I had at the time.

Anyway, she was horrible. I felt like she was judging me when I answered her questions, which meant I didn’t answer them honestly. Not the ideal scenario for therapy, where you should feel like you have a safe space. All in all, it was a pretty pointless experience.

Online DIY CBT

I don’t remember what prompted a GP to give me a list of free self-help resources, but they had. I think this was around 2014. The first one I went on was called Moodgym. It was a CBT-based online resource that you worked through at your own pace. It helped me identify what it called “warpy thoughts”, which identified my perfectionism issues. This is not the last we hear of those! It was very useful, and it helped me get back on track mentally, and really quickly! I don’t think this is free anymore, or maybe you get to try one module for free or something. I really liked that I could work through it on my own. Sharing my thoughts with people was a no-go at the time. I was extremely uncomfortable with that kind of vulnerability. I suspect my first experience of therapy hadn’t helped. I went back to moodgym a few times over a few years.

Mental health nurse

Around 2016-17, I had been back and forth to the GP complaining of constant fatigue and joint pain, which they concluded was due to depression. I was also continually flaring with pouchitis which caused a lot of abdominal pain, toilet trips, and poor sleep. I was asked if I had stopped doing things I enjoyed doing – a common question when assessing someone for depression. I tried explaining I had, but that was because of the chronic fatigue and pain. I simply didn’t have the energy to do anything I enjoyed. It wasn’t that I didn’t want to or lacked the motivation. I believed the fatigue and pain were the cause of my unhappiness, the unhappiness wasn’t the cause of the fatigue and pain. Then I started to question myself. How could I be sure where one ended and the other began? Maybe that had been the case initially, and now I really was depressed? I knew I wasn’t happy. How could I be when I was too unwell to do anything or go anywhere? But I was pretty certain that once I was feeling better, I’d be happier.

Anyway, I ended up being sent to the mental health nurse at my GP practice. I was dreading it. I probably expected a re-run of my first therapy experience. Thankfully, it wasn’t like that. The mental health nurse, Jonathan Boden, was actually a really down-to-earth guy. He didn’t make me feel uncomfortable in the slightest. We didn’t talk in-depth about how I was feeling. I think we both recognised that I was dealing with situational depression and that actually, my mood wasn’t going to improve until my health did.

It’s probably important to note the difference between situational and clinical depression at this point. Situational, sometimes called reactive depression is the response to a stressful, traumatic, or difficult experience. It’s usually short-term and improves over time, as you learn to adjust or the situation changes. Clinical depression is a mood disorder that people often live with for a long time. It can happen with or without a specific stressful or traumatic event.

I was given medication, and we regularly talked about how I was sleeping. The fact was, it often wasn’t possible to sleep. The abdominal pain due to my pouchitis flare was really bad, and often kept me awake. I started on Mirtazapine and had an awful reaction. I woke in the middle of the night, completely paralysed with fear. I wanted to wake my partner but I couldn’t move or speak to wake him. Then I felt like I couldn’t swallow and the panic grew even more. I decided that was not the medication for me. I also tried Trazodone but ultimately ended up settling on Lofepramine in Jan 2018.

I had surgery to remove my jpouch in October 2018, and I wasn’t given the Lofepramine during my recovery. I didn’t realise until I got home that I’d gone without it, but I didn’t see the point in going back on it because I already felt so much lighter. I knew recovery wasn’t going to be easy, but I could see the light at the end of the tunnel.

When I caught up with Jonathan on the phone, he agreed that I could be signed off from his care and that was that.

Self-referral – CBT and talking therapy (phone)

I went to the doctor to say I thought I would benefit from some form of therapy, as I’d realised I’d been through a lot in terms of my health and relationships and I probably needed to talk about it. I was given a list of a few places to refer myself to. Following the assessment call, it was decided that I had generalised anxiety and that CBT would be the best option for me. I think I had six telephone sessions, but it ended up being about life in general and coping mechanisms, which was fine but I already had these tools from previously having done moodgym. When it ended, I didn’t feel like I’d learnt anything new. I didn’t feel any better. I felt so deflated. I considered referring myself again, but it felt like such a tiring process to just come away not feeling any better again.

I feel like I’m quite emotionally aware at this point. I guess that comes from years of practice, counselling myself, and being willing to really look at my triggers, stress levels, and emotions, So, whenever I’ve referred myself to therapy, it’s been when I’ve felt things are building up too much for me to handle on my own.

I referred myself for therapy again a while later and the assessor yet again suggested CBT for generalised anxiety. I told her I had concerns about that based on previous experience, and she said talking therapy was another option. I went ahead with the talking therapy but I honestly remember nothing about it. This was all over the phone too. I always find talking to therapists difficult anyway, as I’m much more comfortable in the role of the listener. I imagine I didn’t share a lot of personal stuff with her. I certainly don’t remember it changing my life in any way.

Self-referral – Online CBT

During COVID-19, I started experiencing regular panic attacks. Panic symptoms weren’t new to me. The not being able to swallow thing that had happened during my first night of taking Mirtazapine had been a fairly regular panic symptom ever since, which usually prompted a cascade of other panic symptoms. But it had been so much more regular than “normal”. Every single night when I was on the verge of sleep, a rush of panic would shoot me back up to the surface. I spoke to the GP in Jan 2021 who suggested medicating me. I said I didn’t want to try medication at this time, so he sent me a link via text message for self-referral.

I had an assessment call in March with Talking Mental Health Derbyshire and I agreed to online CBT for “panic disorder” because that would get me the fastest access and I was feeling pretty desperate. I already had my doubts about the fact we were just going to type to each other, and then there was the fact that it was CBT, again. It started a few weeks later and was unhelpful as I suspected. I started to dread the appointments, I didn’t feel like she was hearing me and she was just giving me the same tools I’d been given over and over in the past. I ended up just telling her what I knew she needed to hear to make it be over faster… That resulted in me completing 5 sessions, not the six decided on initially.

Self-referral to a new service

In September 2021, I referred myself to a new service, Vita Health Group, which I’d seen recommended by my IBD nurse on Twitter. I hoped I might have more luck with them. In the same month, my GP also referred me to the pain management clinic because I was not managing well with my fibromyalgia.

I’d delved into the depths of chronic pain science and found it super interesting. I’d learnt about how my previous experiences and mental health played into my experience of chronic pain, so I went into it hopeful that working through some stuff might help improve it. I had a lot of hope pinned on this next therapy! The Vita Health assessment determined my symptoms were consistent with depression and decided low-intensity CBT (LICBT) was the best option. The wait was expected to be 10-12 weeks.

Over the next months, I had a couple of texts to reassure me I was still on the waiting list. Then, I had a phone call offering me group therapy sessions which I turned down. I couldn’t think of anything worse! The pain management clinic had recommended I attend the pain management programme, which started in January 2022. I hated it. The content of it was useless to me and the group element was painful! No way was I signing up for anything else with a group of people. So that shows how long I was waiting for, as it was well into January when I received the call. It was pretty clear that there wasn’t going to be any available one-to-one sessions available any time soon. She offered access to some kind of self-help online platform which I ended up accepting and never looking at. And that was the end of that. They got me off their list and I got sweet FA.

Done with self-referral

Being able to refer yourself for therapy sounds like a great idea. Giving people the ability to access support as and when they need it has the potential to be a game-changer. However, in my experience, it’s all too generalised and too slow. If you’re dealing with general anxiety and/or depression, it might help, but for many of us dealing with chronic health conditions, it’s more complicated than that. The suffering and trauma is not general.

I’m also usually all for digital services, but when it comes to things like therapy, not being in the same room and the therapist not being able to observe body language and stuff makes no sense to me.

I didn’t feel like I’d even scratched the surface throughout any of it. They just wanted to talk about general stressors and anxieties. I was aware that I’d dealt with more than a “general” amount. It was clear none of these therapists had a focus on chronic health conditions, and I was so sick of seeing the word generalised on the GP’s system in terms of diagnosis.

The more work I have done on myself, the more I have become aware of the issues I have. Many therapists have identified my perfectionism issues and the need for control, but rather than trying to get to the root of it, they just offer tools, which for me, is another form of control and is unhelpful. I can honestly say that I’ve been using the tools I do find helpful for years, since the very first access to moodgym. None of the therapy sessions since that point have given me anything new and usable. I tried to bring up the traumatic experiences I’d had in the hospital and throughout my healthcare journey on more than one occasion, but it’s never been addressed. Invalidating my struggles and ignoring things I think have had a massive impact on my overall mental health completely defeats the object.

At this point, I knew I needed more specialist help, but I wasn’t sure how to go about it. I also knew I didn’t have the motivation to try and find out because I was so deflated by all of my previous experiences. Fortunately, over the years, I’ve developed an arsenal of coping mechanisms and tools that will generally get me through. That said, things have repeatedly built up and gotten too much for me, so I knew it was something I was going to have to act on sooner or later! More on that next time.