Monday, 7 October 2019

The Waiting Game

I'm not a patient person. As I have learned to manage my emotional storms, I'm realising I am an ultimate optimist. If I believe something needs to be said or done to change a situation I want to immediately act to do that. Since 2010, following my diagnosis and entering the wonderful world of mental health services, so much of my life suddenly spun out of my control. I could try to give my perspective on why so much of my experience of waiting has been linked to going on a list to be assessed for suitability for 'treatment' but I don't think or believe that it helps to identify factors that are beyond my control.

Recently I've experienced the same frustrations while waiting for assessment of a physical problem. It has given me pause to consider the things that I do which make that waiting time either painful or bearable for me. There is something in the power of my thinking to either make time seem like eternity or go quicker than I expected. I've realised that rather than being powerless during these times, I can control those things which I have control of. I've recognised a number of ways that I have been able to manage these times better than in the past.

1. EXPECTATIONS. There is nothing worse than time on my hands to make my mind increase or decrease the importance of small things to the final outcome when whatever I am waiting for arrives. If I have waited for two years for 'treatment' the importance I place on that longed for appointment becomes enormous in comparison to the what the human being behind the date is able to deliver. I think this is the most important element to manage so that long waiting times do not become a matter of gambling with how quickly my initial presentation at assessment may deteriorate. Too often waiting periods end up being shortened due to lapse into crisis. Sometimes my self harming behaviour is a way of short-circuiting the process because I feel that if I go on feeling this way much longer, I will literally die. I need some help to get through the heights of emotional pain, so that each of those moments is not necessarily going to end up with an inpatient admission. I need help to create in my own environment a safe place to wait. I wonder if equipping me again becomes part of the triage and assessment stage? This could mean that I don't have an assessment appointment followed by between six months and two years of nothing. THAT feels like I'm in limbo, abandoned, in no mans' land, helpless and more importantly as waiting magnifies my negative thoughts and feelings: not worthy of help.

I wonder if, while waiting for specialist service appointments, there is scope for equipping people with self management and distress management skills. Mindfulness which was core to my DBT therapy has been so helpful in so many waiting times for me. Could it be useful as a tool, among others, to help people manage the time spent waiting (given that the prevailing economic and political realities prevent these times from shortening in the short term.)?

I have noticed that when I break a leg or an arm, while I am waiting for the orthopaedic specialists the emergency staff have measures to support the broken bones, and alleviate the physical pain. Of course no one can remove from me the emotional pain and distress I am experiencing, even when I end up before the professional I have been referred to. No one can fix me. No one can undo my past traumas. No one can stop me feeling this lousy. BUT I can be helped to learn to manage such pain and distress in less self-destructive ways. Can I be offered some first aid for my emotions which can hold me while I wait?

2. PERSPECTIVES. My feelings and their imbalance within me cause my perspectives on the world around me to become skewed. Given the extent of my distress small things had huge impacts on my mental health. I tried two different interventions and waited 18 months before I started my DBT journey. During the time between diagnosis and about six months in the DBT programme I was still trying to remain in my demanding job. My perspective on waiting for treatment and starting treatment was heavily influenced by the sickness procedures which seemed to place some kind of magical aura on the idea that I had started being 'treated' for my 'condition'. The expectation became that because I had two days off a week to attend my group skills and individual therapy, then there should be no further issues from my mental health that would affect my work. In other words, having supported me during the waiting time, my employers then expected me to be magically 'fixed', ignoring the fact that my long term mental health struggles would require long term management, including re-learning how to adapt myself to any work environments, without ending up emotionally exhausted.

If we see our struggles with mental health as tackling pathogens, then we will end up having major conflicts between the needs of people using services and, particularly the medically trained professionals who determine pathways. I WILL blame you if you do not 'cure' me, you WILL blame me if your medications or treatments are not as effective as you had hoped. So many times during my experiences of different interventions I was told I had not made the most of the help on offer. DBT was the first time I was told that if I was not making progress then we needed to review how suitable the intervention was for me.

Another aspect, particularly when waiting and expecting the magic bullet of 'help' is time itself. I had experienced significant trauma from early childhood right up to leaving home at 18. Then again as an adult I experienced rape and sexual assault on two other occasions (as a woman there were other lesser assaults which were just part and parcel of life in the 80s and 90s), last being when I was 40. I was diagnosed with BPD (Borderline PD) at the age of 42 although I had been through many experiences with Psychiatrists, Psychologists, Counsellors of various shades and theories from the age of 15. It is now ten years since my diagnosis. Only five of those years involved regular contact with Mental Health Practitioners. In pure terms of number of hours spent with those practitioners compared to the number of years of turbulence and unhelpful coping methods, including self harm and self destructive behaviours. Given this, it would truly be miraculous if any Mental Health Practitioner was able to 'fix' the impact of so much trauma in my life. If during the time I have to wait for a first appointment I can be prepared to recognise these realities and to accept that, at best, I will have the support and expertise of someone to walk alongside me for a time as I begin to learn new ways of coping.

3. TIME. There is something in our culture at the moment which seems to encourage us all to wish our lives away. How many of us set our sights on our next break from work, be that the weekend or our next holiday. When I am struggling most, I find it easiest to live one day at a time. I have to. I don't have the emotional capacity to imagine or hope for more than one day at a time. When I have been at that stage, I have taught myself to look at moments as more significant than something to be endured while I wait for something in the distant future. If I can focus on each moment as a span of time which I can experience fully, either to be enjoyed or endured, then I know I can survive. And as things improve, those moments begin to lengthen until I can imagine myself engaging in life more than a day at a time.

4. RUNNING AHEAD OF MYSELF. One of the hardest things I face during recovery is my impatience to get to some goal or other. At the moment I am tired of not being able to negotiate the complexities of returning to paid employment. I am managing my condition, but I don't know yet if I am ready for increased hours and pressure yet. Most of all I find the temporary nature of so much of the voluntary work I'm involved in difficult to manage, apart from the uncertainty thrown in every 18 months of having my benefits reviewed. I find the system itself is a major hurdle to negotiate to try to build up paid work. Most of all I face tremendous stigma based simply on the diagnosis I received, having worked successfully in some challenging areas. I have found with small projects and part time work, once I have reached interview or even people have seen me in action, there is usually no problem with my suitability. Sadly for the first time in my life I find that the thing which gives me added experience and expertise in working with people with complex needs, something I previously had paper qualifications and work experience for, means that my application is likely to end up in the bin, without me even being considered a serious contender. This puts a pressure on to prove myself to people who have a skewed view of Mental illness and PD in particular. So, I find myself wanting to change the universe in order to push deadlines which I know are immovable. I cannot make Christmas Day move forward from 25th December if I simply put my tree and lights up. I cannot make Colleges and Universities or potential employers change their admission/application times or procedures. Ultimately, I cannot know if I am ready for more hours of work, until someone gives me a chance. Until then I need to accept that there is a lot about the world of work and attitudes of employers to mental health that I cannot change.

Ultimately, time spent waiting can either be painful and feel like time wasted, or I can try to redeem the time:

- by not focusing on the event, appointment or occasions I am waiting for.
- It helps to go back to basics and try to live one day at a time.
- To admit when the environment is too difficult for me to change.
- To accept that moaning and allowing myself to stoke feelings of anticipation and anxiety will only make the passage of time feel as if it is slowing.
- To notice the positive things about having this time to work on things I rarely have time to work on...such as my yard, my dog, my fitness.

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