After nearly 2 and a half years of volunteering for Endometriosis UK, I have had to step away from my role as assistant group leader for our local support group. I thought I would write about this in a reflective way as, although the role didn’t take up tons of my time, it was really important to me and I am sad I have to give it up.
It hasn’t been an easy decision but wanting to progress in both my personal and professional life means I have had to make the hard decision to put those things first. As we look back on a 2016 of poo (for a multitude of reasons), I want to try and build something for myself in 2017. Some might see that as selfish but I have to see it as self care.
This post will most likely be peppered with plugs for Endo UK as I think they do amazing things for women who suffer with this overlooked condition. But stick with me…
I have done some volunteering in the past as a student but I had never done anything on this scale for a charity before. I had also not done volunteering for anything that had impacted me so personally and I wanted to channel something negative into a positive.
I had been attending my local support group for a while having heard about it via Endo UK’s online support groups. After a while the group leader asked me if I would like to help her with the group. I have written in the past about Endo and coping with a chronic pain condition so I needed little convincing that helping others with the same condition would be a good idea. I was also excited to work with her because as well as being a volunteer she is a nurse who specialises in this area of healthcare.
I think there is plenty out there already about the benefits of volunteering so I won’t add to the already crowded internet space with trying to preach to anyone reading this about why you should give back and how it helps you as well as other people.
I will however say that my relatively short time as assistant group leader has unlocked opportunities for me. I have;
- Marched for the charity to raise awareness in London
- Run a support group on Facebook and generally tried to raise awareness online (which I will continue to do as much as I can) which has enhanced by ability to manage social media pages.
- I attended an EndoUK information day in London which opened my eyes and educated me about the condition further than just my own experience.
- I have met some of the strongest and most selfless women I have ever come across and been inspired by them. This includes the group leader!
- I have learned more about myself and reaffirmed the notion that even if you think you have strong skills in say, communication or dealing with difficult situations, you can always put those skills to the test and make them even stronger.
One of the main challenges however of running a support group is making sure you’re reaching everyone who needs help. Much like my day job, sometimes you have to accept that you may not have a room packed full of people. Which is fine.
I think for a lot of women with Endometriosis, seeking support is cyclical (for some women, much like the condition itself). That is to say that people need help when first diagnosed and when going through flare-ups or surgeries but apart from that I think a lot of people spend their time just trying to cope or pushing on regardless of ill health.
If you are suffering with any kind of chronic condition, I’d advise you reach out on the internet and look for a support group. Even if you don’t want to speak to someone face to face or you’re not physically able to get out of the house there will be an online option for you. I have found Health Unlocked really useful.
To a lot of people me telling people to reach out might sound obvious but you would be amazed how few doctors know that Endo UK and organisations like it exist and so do not refer women to support groups as a result. This often means women are given a diagnosis and then left to try and work it out for themselves with only Dr Search Engine for guidance.
For those who are able to get around easily, a face to face support group can help you see you’re not alone, even if you don’t feel like opening up about your health, it puts you physically in a room with people who know a least a little bit about what you’re going through – and that alone can be a comfort. And if you have a condition and feel like you have it under control, you can share your wisdom and coping techniques with others as well.
I am always happy to chat to people about endo, online and can be found on twitter using @eemaalou for anyone who wants to tweet or DM me.