Patient Advocates are volunteers

This gets forgotten so many times.

I have spent a lot of time thinking about this post, how I should word it and if I should share it but after speaking with a number of other volunteer patient advocates I feel it is important to share what we face.

Firstly though I need to clarify what I mean by patient advocate because this has caused confusion before but mainly on the conference circuit where patient charities or organisations will have someone charged with doing patient advocacy but this will always be done with a slant of what the charities position is on the various issues.

I am a patient advocate. It is a role I have come to be in because of my experience of living with chronic illness. My experience has been pretty awful. When I was first a young adult there was no social media, no online support groups, dial up internet was still a thing and any question that you needed answering you Asked Jeeves or looked up text books. Latterly social media has been the main tool for patient advocates to connect with their communities and connect with each other. I think my experience of chronic illness would have been very different if I had all these tools and methods for connecting with people as I would have found out that I was not alone and there were others like me.

I wish I did not find myself in the situation I am in where I am a patient advocate but I do think I have become good at it and will look at life with a fairly balanced view point and when anyone asks me for advice or I see a post with someone struggling then I will always strive to give my best answer and also be able to justify my answers.

I think people often forget that patient advocates are primarily patients, then advocates and also volunteers (are not paid for what we do). We also do not have unions who we can take difficult situations to like you do if this was your paid employment.

I really enjoy the work I do as an advocate as I have made some great friends and met some fantastic people. There has also been a lot of challenges and hardships with it which when I am not feeling well I have ended up questioning my entire being as to why do I spent so much energy being a patient advocate when I don’t need to.

I have written before briefly about a situation I faced when I was working as a staff nurse and false accusations that were made against me about accessing medical records and then sharing them on social media- of course this was not the case and I did nothing wrong. This person Nicole G still gives me grief as they manage to come out the woodwork every now and then and send people messages that I had no idea how close I was to losing my job. I didnt lose my job or anything. But when this occurred and this occurred as a result of me being a nurse and a patient advocate. I was new to being a patient advocate and did not appreciate how lucky I was that these accusations were made at work as I had support from my colleagues and bosses etc.

However recently I have had a real horrible time. For once in my life I have decided to put myself first and my health first before helping others. This is particularly the case when you are not feeling well and really struggling with various diagnoses and the constant need for blood tests and symptoms which you have no idea why you are getting. When any one of these things are going on as a human you need to focus on you. You can only do good work when you are in the best health you can be.

I also knew I had to take a small step back when I was hearing from people about how awful their life was and how they had no life etc etc when actually I would have done anything to have their life- of course you never know what is going on beyond that of what you are told but we all make judgement calls and with social media you can tell to a degree what is going on with someones health.

I took that step back and removed myself from people who I felt I could not deal with during that period because it is all about them and there is never an ask about how you are. The best way I have found is to just remove these people from social media to protect myself and ensure I can concentrate on myself and my health.

What I did not expect is to get lambasted for looking out for me. The support from others when I had to deal with a situation at work I took for granted as it was all taken out of my hands and dealt with by my bosses. I wish now I had not taken what they did for me so lightly because right now I could do with someone else dealing with a situation I am dealing with now. I think what has got me more is that being an advocate you respect other advocates and know they may need to take time out and also may not want to speak to people about why they have disappeared. It got to the point when messages were being sent to other friends and putting them in the middle that I broke and said the reason why I was not connecting on social media etc and need to prioritise myself. I would have thought that someone who is an ambassador for a company called My Beautiful Wigs would understand and would not challenge me for my reasons wether they agreed with them or not. I was then subjected to some horrendous messages such as the screen shots below. (I know some will have questions as to why I share this but this is not an isolated incident and it is not isolated to me- so many advocates get messages such as this but they never get called out on it. Well I am going to call people out because attacking people who are chronically ill while they are trying to help others is very nasty).

It has really rocked me a lot and while I am not feeling great it makes me question why do I bother doing what I do but also it has made me realise that as patient advocates we are very vulnerable and there is no union or anything that we can turn to for help. If the screenshots above had been sent to me regarding the situation at work I would have had support and potentially action could be taken but not now. I am an island that is connected to a network of other advocates who shockingly have all had similar situations. This really bothers me more than the situation itself. All we can do is block and move on but as in the work situation people can always make new accounts, or as I have heard from other advocates people make fake accounts. Blocking etc is all very well but it stays with you like this has.

I love being a patient advocate but there is only so much you can take and why do we have to take it. Now people can hide behind a screen and don’t need to say things to peoples face which is cowardly. I try my best as a patient advocate and want to help people who are struggling but right now I cant do that. I need this time now to enable me to advocate in the future.

As patient advocates we do not like the show the negative side because we get so much out of it and enjoy what we do. Negative feedback always hits harder and stays with you longer than positive feedback. It is a horrible feeling where you question what you do because of the actions of a few people.

I don’t want this post to be a blame, name and shame situation. I wanted to show the ugly side to patient advocacy. The side that no one sees. The side that there is no formal support for. It is not one community that get it more than an other as I have heard from a range of different advocates about their experiences too. It is not ok, it needs to stop and needs to stop now.

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