Mad Covid Voices, with Stacey

13th April 2020

How has your care changed since COVID19?

COVID has changed a few things about my care, and I’ve found it quite disconcerting.

Until a few months ago I was seeing a CPN every few weeks for general monitoring and support. She actually left the CMHT at the beginning of March, and I was assigned a new care coordinator right around the time that things started shutting down. I’ve had a few short phone calls with her, but as I struggle with anxiety if I have to be on the phone for long, it’s just not the same kind of support, and I don’t feel able to be fully open and honest in the way I would face to face.

As I needed to sort some things out with medication, I arranged an appointment with the consultant psychiatrist at the beginning of March, which was meant to take place in May. I’ve heard nothing about whether that’s still happening and I’m wary about calling the team to check – I don’t want to seem like I’m bothering them or being unreasonable. While these appointments feel essential to me, I’m aware that the NHS in general probably doesn’t see them as such.

In January I’d also started attending a Distress Tolerance group, which is as close as you can get to DBT in my area. I’m now just having weekly one-on-one phone calls with one of the facilitators to go over skills. It’s fine and I’m still learning, but it’s not remotely the same. In the group setting we weren’t meant to talk about personal issues, just the skills, and I hadn’t had the one-on-one time with the facilitator to build up the kind of relationship needed to do that anyway. Now that we’re doing the phone calls I’m meant to talk in more detail about specific personal issues I’m trying to address, but without that relationship and precedent I feel quite awkward. This is another situation where my phone anxiety comes in. I only have a few more sessions to go and while I feel it has helped somewhat, I sadly don’t think I’ve got the benefit from it that completing the group sessions would have given. I’m worried about having to re-do the treatment in the future and feeling like I’ve failed because “one go” wasn’t enough.

The support I was having from the Employment Service within the CMHT has also completely evaporated. They’re meant to ensure I have support to get and stay in work due to the obstacles caused by my mental health, and as I still have imminent interviews (in essential fields) this is quite worrying. I have email addresses but the old fear of being a burden gets in the way.

How have those changes affected your mental health? 

I feel like my support network is much less robust and individualised than it used to be, which is causing me a fair bit of anxiety as I no longer have regular appointments and check-ins to make sure I’m doing OK. I worry that I could be seriously going downhill without realising it, and that without actually seeing someone I’ll get to crisis point more quickly.

The sneaky BPD part of my brain also skews it to feel like abandonment or rejection, simply because of the abrupt withdrawal of face to face contact. Logically I know that it’s not their fault, and that it’s nothing to do with me personally, but it still scares me to think that the support I want and need just doesn’t exist for the time being. I feel a little neglected, even if that’s not fair or rational.

Have you been told how to get help in a crisis since COVID-19?

I’ve not been told anything new about what to do in a crisis, so I’m assuming the same generic advice as before (care coordinator/Crisis Team/A&E/Samaritans etc, depending on severity) still applies. I would definitely be less likely to use those resources now, as I would worry about putting pressure on already busy services. I feel like it’d have to be a life or death situation for me to ask for help and get it in good time. Which makes sense, but it’s still frightening.

I’m grateful that I’m not as volatile as I was a few years ago as I think the psychological impact of a pandemic would have put me into quite a dangerous state of mind, but I still wish I felt more stable. BPD is such a changeable condition that I never quite feel comfortable saying “Nope, I’m OK, definitely won’t end up in crisis”. It’s an unsettling middle ground – I’m not drastically unwell enough to need imminent support, but I don’t feel “recovered” enough to completely dismiss the possibility either.  

How is the experience of self isolating/social distancing in the community? (how are you finding living alone/with others, are you able to access support, food, meds, things to do etc). 

I live with my husband so I’m not completely isolated. He’s a key worker so is at work 6 days a week, but as an introvert I don’t necessarily mind having some alone time. We’re still doing ok with getting food/meds at the moment, but I have a lot of anxiety around the possibility of one or both of us getting ill and not being able to do that. I’m on weekly prescriptions, and the near-certainty that I’d run out of medication if we were both infected really plays on my mind.

Although I stayed in the house a lot before COVID happened, I never realised how much I was still going out, compared to how rarely I do that now. Around the time I started the Distress Tolerance group I’d had to be very firm with myself about making a schedule and sticking to it. That schedule was partly based around forcing myself to leave the house regularly and for at least an hour or two at a time, especially in the mornings. I was just about settling into it, and it really was improving my mental health, when lockdown started. Most people wouldn’t have thought I was busy before, but I felt busy, and even fulfilled! That’s been stripped away so I’m having to completely redefine what a “mentally healthy” routine looks like for me now. I feel like the goalposts are constantly shifting.

A big part of the impact on my mental health is to do with what you’re “allowed” to do, and the judgement if people think you’ve “broken the rules”. Even before lockdown officially started, I’d seen so many social media posts essentially saying “if you go outside you’re a selfish piece of shit” that I began to feel guilty and paranoid every time I stepped out of my front door. The worry over whether authorities like the Police will start abusing their newfound powers is also making me feel quite uneasy – I have a lifelong terror of “getting in trouble” that can border on paranoia. I’m not quite sure how to deal with that under these circumstances.  

Have decisions been made about your care (discharge, referral etc) that you believe wouldn’t have happened if it wasn’t for COVID-19? 

No decisions like that have been made yet, but it really wouldn’t surprise me. Before starting my group I’d discussed the possibility of getting further support for issues like binge eating and trauma once it finished, as those things realistically wouldn’t be solved by Distress Tolerance. I now very much doubt that this support will ever materialise. I’m also concerned that they’ll decide that my mental health “isn’t bad enough” for the CMHT and completely discharge me without asking and before I’m ready. I’ve been turned down for support before – when I was genuinely at rock bottom – because “other people have it worse”, so I think it would entirely break me.

Is there anything else you would like to tell us? 

I worry that, with all the emphasis on treating a physical disease, mental health will be forgotten again, thought of as less important, and more people will slip through the net. As a collective trauma the pandemic will affect everyone, but I think it will disproportionately affect those of us who have existing issues.

It feels like in the general narrative of COVID, people with serious mental illnesses aren’t being talked about or acknowledged. In the eyes of the general public, I feel more invisible now than I did before. That’s why I think Mad Covid is such an important project – because it creates a community where we can talk about our experiences of the pandemic, and assert the fact that those experiences matter. I’m really glad to be a part of it.

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