Its no secret that recently I have had a lot of trouble with my health and the health service. I have found myself in the position where I am not sure who I can or cannot trust especially those who have been looking after me. It is a position I never expected to find myself in. I can really only say it has broken me. I wish there was some sort of handbook that can help you out of those situations, a guide on what actions to take to try and correct everything that has gone on so I feel confident when I am attending appointments knowing that they trust me and respect me.
The one thing I can say of the health service however is that what I say to them and how I feel does not leave the health service. They may speak between disciplines but they don’t speak to just anyone and certainly don’t speak to others outside the health service without my knowledge which I am so grateful for. Don’t get me wrong, right now I still feel very vulnerable and having a lot of difficulty engaging properly in appointments but I hope once my wound heals I will be able to build myself back up.
Trust however extends to many aspects of life. Recently I found my trust was once again broken but possibly in one of the worst ways and it has hurt me really badly because no one will own up to speaking. I have spoken about the peer support work I do and how much I have got out of it. To preserve the name of the group I will not name them as they seem to be very concerned about how things will appear outwardly. But I was trying to do what is best for me to enable me to get myself to a place where I feel well and feel settle. I was trying to rid myself of all that has been causing me undue stress as right now I do not have the energy for it especially when it is something I am doing that is bringing me no joy. I expressed this in a private email along with my resignation as since taking on a role it has only caused me heartache as it is clear that some wanted to status quo to remain and not have a change of chair.
Within peer support there is an expectation of privacy and generally what happens within the peer support group stays within the group. So I was extremely shocked when I got an email from someone out with the people I sent it to saying they heard about the issues I was having. I cannot believe this has happened. The person was only meaning well getting in touch but what it has taught me is that I should never make assumptions about anyone keeping something private, and I should always explicitly state that something is private and confidential.
This event has really rocked me and probably more that it would have as I was already really fragile after my recent experience with the health service. I am also really sad that something I have benefited from so much and dedicated a huge amount of time to is now in jeopardy. I am not sure how confident I would be to share my thoughts and feelings with them again. Wether it was intentional or not I need to know who it was an also for them to tell me and just say sorry. The reason why I want this is because I think I would probably be more confident speaking at a support group meeting knowing who it was and depending on their attendance or not. If the person that broke my trust was not there I would share a bit more potentially.
I am feeling so vulnerable just now. I recently had a respiratory clinic appointment and for the first time I was so anxious and worked up before it and found myself not engaging as I normally would. I found myself freezing when I wanted to speak or share how my asthma has been. As a result I have since written to my consultant to tell him how things really are, the difficulties I have been having and to apologise for being quite short in the appointment. I don’t want to close myself off but I am finding I am doing it more and more as I am terrified of going through repeat situations that I have had this year. Living with multiple health conditions it is key that I can speak to them and be honest with how my health has been and how it has been impacting me. I need to somehow find a way of getting my confidence back otherwise there is no point in me attending any clinic appointments.
If anyone has any tips please let me know as I am so lost right now and have no clue how to get back to where I was before.