Today 10th October 2022 is World Mental Health Day. I was asked to give a brief talk during the event Living Well: Emotional Support Matters hosted by The Health and Social Care Alliance (Scotland). My talk was titled: Benefits of using your own experience to call for change. This blog post is roughly what I spoke about.
Mental health has long been a bit of a taboo subject but slowly the perspective is changing and people are understanding that mental health is just as important as your physical health. There is still a huge amount of stigma surrounding mental health and many fear that they will be judged as weak if the admit to having an issue.
Over the years having a chronic physical health condition my mental health has taken a hammering. For many many years I was never asked about my mental health so I tried not to think about how down I felt and focus on the same goals that my Drs had which was trying to get my asthma more stable.
I look back and wish that I had not buried my head in the sand with regards to my mental health. I figured if I didnt admit to some of the things I was feeling then it would go away. At the time I thought that perhaps the way I was feeling was normal because I was not being asked about it. I now know this was not the case. I think partly I was never asked about my mental health because if I was asked and I admitted there was a problem then the Drs would need to be able to provide me with support but mental health support is chronically under funded and they may not be able to help me so by them not asking meant there was no issue.
More recently my team do ask about my mental health but there is still not much support there so I try to support myself. I find writing cathartic and this was my way of helping my mental health, keeping my blog. I have always thought of myself as someone who is not very good at speaking about my feelings and experiences I go through with my health however that is not the case. Over the years as I have found myself becoming more of a patient advocate than a patient raising awareness about a condition I have been able to speak about my experiences with my health and in doing so I have been able to help myself too particularly my mental health. It has all evolved over time rather than a clear event where I made a choice about what route I wanted to take.
For most of my adult life I have been plagued by my health. It has been a never ending story with little light at the end of the tunnel. It continues to be like this. Along with the frustrations of my physical health I have had a bunch of emotions such as anger, depression, grief, frustration. I just tried to bury them.
More recently I have found using my lived experience to help effect change has been one of the best things to help manage my mental health. My mental health issues have stemmed from what my physical health has prevented me doing. I have now gone from someone who was very angry about how much has been taken away from me due to chronic ill health to someone who can understand their physical health and finds positives out of it.
I never woke up one morning and decided that I was going to use my experience of physical health conditions to benefit others. It has been an evolution however I wish I could have been told many years ago that I could help myself by speaking about my lived experience to those in healthcare, policy makers, government or researches who want to bring about change to make peoples lives better.
It is often hard to find positives in a situation where you feel your entire life has been turned upside down and all that you love doing has been taken away but you can. I have found that using my lived experiences can help others. It means I am changing a really negative situation into a positive one. It has also allowed me to understand my health better. Before when I would think about my health I would get angry and upset unable to think constructively and coherently. Now when I think about my health I can do it in a more constructive manner and ask myself how can I use this experience to either benefit myself going forward or benefit the wider community who may be in a similar situation as myself.
Don’t get me wrong there are some days where I feel like giving up. I want to press pause on the life I am living and do something else- if only it were that easy. I still have days where even just getting up seems pointless and I see no way forward and this is ok. It is ok to feel awful and have a good cry, feel sorry for myself and question why I was given this life, why could I not have had an easier one but as the years have gone by these days are fewer. I think they are fewer because I allow myself to be present with my emotions and feelings sometimes. I don’t bottle it up to the point I explode and take forever to get myself back from. Allowing myself to get upset gives an outlet for me. I get everything out of myself and can then move on and refocus myself.
I have found using my voice as a patient to speak to policy makers, other patients, members of Scottish parliament, students, and pharma (plus more) to effect change and ensure that the work being done in different sectors is actually going to be a positive improvement for people. It has been and continues to be a way to help me stop my mental health from spiralling out of control as a result of my physical health. It has essentially been an intervention to help me without it actually being an intervention. Not only has it helped changed my mindset when dealing with my health and the restrictions that puts on me but as a result I have had some of the most amazing experiences which had I not been unwell or not used my patient voice I would never have had these opportunities (a couple of stand out events I have been to as a result of using my voice are in the photos below). Using my voice has also given me confidence, I have gone from a very shy quiet person (unless on a sports field) to someone who is happy to speak in front of hundreds of people. I have also gained so much knowledge from working alongside some of the greatest asthma researchers that there is. I have been able to harness my experience and use it to facilitate peer support groups too. The biggest impact of using my patient voice and lived experience is that it gives me something to do most days, health permitting. My health has slowly taken more and more away from me and my life however no matter what I will always be able to use my lived experience in some way wether it is attending meetings in person, on zoom, or doing emails and social media from a hospital bed. My health will never take that away from me and I treasure that so much.
I have also learnt that we often need to think outside the box to help ourselves. If I had gone to the GP or one of my consultants about the struggles I was having with my mental health I would more than likely be prescribed an anti depressant, perhaps had a referral for some psychological support and sign posted to various websites encouraging me to do mindfulness or meditation. I would never have been directed or prescribed to use my voice as a patient to share my lived experience to make a change, this would just never have happened even though now I see it as a fundamental part of maintaining my health. I know this is not for everyone and some people could think of nothing worse than doing what I do and that is fine because everyone is different but I would encourage anyone who is reading this to scope out new ways to help yourself or your patients.
Please also get in touch with me if you want to find out more about patient advocacy and patient involvement. I am happy to chat to people and help people get started if they want to use their patient voice.