The value of volunteering when chronically ill.

Chronic illness takes so much away from you. It can leave you unable to hold down a job and therefore no monthly income reliant on benefits but more than that it robs you of your ability to socialise.

The catalyst for the post was a photo that came up on my TimeHop memories when I was recognised as volunteer for the month but then some month later cast aside with no letter, email, phone call. It felt like I was no longer needed, I had worked so hard for them to be cast out much like you would had you been fired from something.

The memory today that was the catalyst for this post.

I remember when I was working full time I would always wish I had more hours annual leave. a weeks annual leave would pass in a flash and before you know it you are back to work. I never really appreciated how much working contributes to your health and wellbeing. I guess that is always the way until it is taken away from you. Then you understand that working is not just working but it is social interaction with others, making friends, joining new friendship circles and often finding new hobbies.

But what happens when you don’t have this anymore?

Your social circle becomes small, only your really really true friends stick around. Others try to stay but it soon dwindles and you get the odd message saying we must meet up but there is nothing more. Which is why we often turn to volunteering.

I have always loved volunteering and still do. Even when I was well I volunteered but when I was well I did not understand the value of volunteering, I didn’t think about it, I just did it. I had the time and I was prepared to dedicate it to help out. My thought process to volunteering changed over the years.

Once I had to give up work, give up playing sport, I felt like I was giving up my life. I wasn’t able to contribute to life like I had before. The one thing I still had was volunteering for Lacrosse Scotland. I was still able to stay involved in something I loved. I could no longer play lacrosse but I had the opportunity to still be involved helping with coaching and as an assistant manager. These roles were worth more to me than any body could know. They represented hope, they represented what could not be taken away or so I thought.

The difference with being able to volunteer compared to employed work when chronically ill is that where work you need to stick to set times, you need to make sure you do the number of hours you are contracted to so there is no option to take time off to recover or have periods of rest to recover from one day of work. However with volunteering particularly with lacrosse I would know the days I would be there so I could plan to rest beforehand and also after to make sure I recovered.

Volunteering also meant being able to socialise, forget about being chronically ill because I was focusing on something else and those around me were focused on what they were doing too so my health was never an issue unlike when I was working etc. I would look forward to the weekends when there was Scotland squad weekends as I was just another member of the team, but I was getting to be with people, I was getting to be just a ‘normal’ person. I loved this. I could forget about the struggles with my health. Of course at the end of a weekend the following days I would be really restricted but it was worth it. To have that weekend every month was something I would look forward to, as soon as one was over I would be thinking about the next one. I felt like I was making a valuable contribution and it was something I could do despite my health.

You can imagine my disappointment when this all went. It was one of the things I valued most in my life at that time. I was not even dismissed from my role, one member from the senior team staff kept ghosting me and not including me in things, then because of her actions caused me to miss being able to go with the junior team to the World Championships in Canada. Then the junior teamed coach left and assistant coaches too but manager stayed and I was too until I saw roles advertised that I filled. The roles were all filled but I had let the head coach know I would be keen to apply for roles if and when they came up. Of course I was shocked when I saw social media posts announcing people who were taking on various roles- I was shocked as I had never seen them advertised and going back they were not advertised. This left me hurt as I felt like I was not worthy and had no respect. I thought the people I had worked with when I was volunteering valued me but I now feel that it was not appreciated. The statements they made when I was nominated for volunteer of the month are empty words now. They don’t mean what they say. I was a commodity that did things for them but once I was no good for them I was tossed out without a by your leave. Gone. But they can get away with it because I was JUST a volunteer. Volunteers come and go, but I dedicated so much time to Lacrosse Scotland. I single handedly raised well over ¬£3000 for various teams. I didnt do that for recognition or anything but I never expected to be tossed out like I was.

Part of me now wonders if there is an element of disability discrimination involved. They didnt want me applying for roles which I would probably be one of the best candidates for because they would need to accommodate my disability so it was just easier to avoid it all. There is always more effort needed if someone has a disability when it comes to accommodations at work or volunteering but it is not a reason for them to be excluded. I didnt really think much of it at the time but now over time as more and more comes out I realise that I really think there is some discrimination going on.

What I want from this post is for people to realise the value of volunteering to people with disabilities. We don’t have the luxury of being able to have a job so volunteering means more to us that just giving up time to help others. Selfishly volunteering gave me more than I probably gave with volunteering my time. So when this is taken away for no real reason it hurts and hurts a lot. I am sure I am not in an isolated situation and others with disability have had volunteering taken away from them.

I am surprised this happened and I didnt think it would. It has taken a long time for me to process and realise. What shocked me more is that this occurred and was allowed to occur by the national governing body for the sport. I probably should have made a complaint about it but I didnt. I have loved lacrosse and have so many happy memories but these are all clouded with how I was pushed out of the sport I love. It will take time for me to process but in the meantime I have so far got rid of 2 black bin bags of lacrosse stuff that has been in my house. I will keep a few items particularly those given to me by a few players and the junior coaching team to embraced me and let me joined their coaching team but otherwise I don’t want any memories of my lacrosse days which is hard and sad but I need to protect myself.

If you are reading this and are someone who works with volunteers make sure they know their worth and if you feel they cant do the role anymore or circumstances change so they are not required (although never sure when volunteers are not needed) have a conversation with them, don’t shut them out or ghost them, this will hurt them and end up questioning all they did.

If you are someone who has a disability and volunteers I would have a word with the person you volunteer for and make sure you know where you stand and that there is good communication between you and them so you don’t get hurt like I have been.

For me. I am now very wary about the voluntary opportunities I get involved with as I am terrified of the same thing happening again. I still do volunteer but it is very much on my terms and rather than being more relaxed when entering opportunities I make sure that I know what my role is, how long I am going to be doing it, the support I get and leaving the role. I also make sure I have one person who is my go to should there be an issue too. Just now I am focusing my volunteering very much on health particularly post ICU peer support groups and then asthma research as well. I get so much out of these and feel valued by the people I am working with.

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