Status, insight and recovery

There are several things I want to talk about in this post, all of which have come about in the past couple of weeks so apologies for the length of this entry.

Firstly, I need to vent a little about how there is such a wide gap in ‘status’ (for want of a better word) between professionals in the mental health sphere and those with lived experience.

I have previously spoken of how my local mental health Trust respects the input of those with lived experience and is actively seeking to engage us in projects and work going forwards.

However, this week, I have had a negative experience (from elsewhere) that shows that in the wider world, those with lived experience don’t rank as highly in terms of importance as those who are paid for their input. The issue of payment and expecting people with lived experience to partake in activities in a voluntary, or lesser paid role compared to those educated on the condition is an important one in its own right but not what upset me in this particular example. Rather, it surrounded the organisation and date setting for an upcoming meeting - ironically, a meeting to discuss an event surrounding input from those with lived experience.

There was much to-ing and fro-ing regarding a date and when we eventually thought we had one set, someone then said they couldn’t make it. So, a new set of dates was sent out because it was thought this person should be at the meeting. I could only make 2 of the 3 new potential times but submitted my availability and hoped for the best. Not long later though, I received an email saying that everyone could do the one date I couldn’t make and so the meeting was planned for that day.

My immediate response was to be furious and hurt at the same time because to me, the email said ‘you are not important enough for us to change the date again’ and ‘it doesn’t really matter if you are there or not’. That, combined with the fact that I have done so much for this project, unpaid and in my own time, plus the fact that I am one of only two people with lived experience invited to the meeting (about involving people with lived experience) in the first place made me so angry and my self-esteem plummet. Why is it that we can change the meeting for a professional but not someone with lived experience?

I struggled to know though, whether I was overreacting and being too BPD/EUPD in my response. I understand that it is difficult to get a lot of professionals together, particularly when they work for different agencies, and the fact that they could all make the date I couldn’t. However, it did feel like a personal snub and a kick in the teeth on behalf of those of us with lived experience nonetheless.

Since speaking to a few people about it who said they would have been equally annoyed, I have reconciled in my mind now that it’s just the way life is sometimes and I have to deal with it as best I can. It did illustrate an important point though, and another area of cloaked stigma in society perhaps.

The second area that I wanted to discuss is ‘insight’. Earlier this week, a clinician commented on the high degree of insight I have into my EUPD i.e. how well I can see myself behaving in symptomatic ways and call myself out on it. That is something that people have said to me numerous times throughout my time under different mental health services and usually, I think it is meant as a compliment.

However, to me, it doesn’t feel like a benefit. In fact, sometimes I wish I was just clueless about why I react the way I do because knowing doesn’t make the intensity of the feelings any less, nor the behaviour any easier to fight. Instead, I find myself knowing that I am acting inappropriately e.g. getting disproportionately angry but not being able to do anything to stop it. This actually makes me feel worse as I end up berating myself for behaving ‘wrongly’ even though I know it is part of the EUPD.

I suppose that having the insight into why I think and act the way I do might be the stage in recovery before being able to change those thoughts and actions but what if I am always going to act, or especially think, in those ways? It just feels like a cruel punishment to see you are doing something wrong but be powerless to change it.

Actually, this leads well into the final issue that has bothered me this week. I have come across a few people saying that those with personality disorders are the worst kind of patients in the mental health system because they don’t want to get better and always sabotage any good work that they or those working with them achieve, in order to stay unwell.

This attitude makes me angry again. Self sabotage is a feature of EUPD, that is widely accepted, but to claim that all sufferers of the condition deliberately and knowingly sabotage their own progress is unfair and inaccurate. I have met many people with EUPD on my journey and whilst I have come across some who didn’t seem to want to put the work in to recover, more did and do, including myself.

What is important to note is that everyone takes their own time to move to each stage of recovery.  I know that at times it looked like I was stuck in a rut, going round and round the self sabotaging cycle but I needed to reach the point where I could move forward in my own head - if you like, have that degree of insight, before I could move on. There is a recovery model that talks of recovery as being like moving along a ‘slinky spring’ or spiral. It might look like the patient is going round in circles but each circle takes them further along the spiral and closer to wherever their personal point of progress lies.

Sadly, there will be some people with EUPD who will actively avoid recovery, in the same way that I came across people with eating disorders who didn’t want to recover - and no doubt the same exists in other illnesses. This though, is largely because they have so much of their identity intertwined with their condition; they don’t know how to be or who they are without it. This lack of self-identity is particularly acute in EUPD/BPD as it actually exists as one of the core symptoms.

I get frustrated when I come across people who don’t seem to want to get better because they do feed into the misconception of others that we are all like that. However, I get more annoyed by those who are too short-sighted to consider the reasons behind mentally ill patients’ actions and create the stigma in the first place.

Ultimately, people with a personality disorder have developed their thoughts and behavioural patterns for a reason and they are deeply ingrained. Thinking and acting differently takes a lot of hard work and a long time to achieve, even with good insight.