Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about Isolation & ME. This is episode 3 for the podcast. Last week I touched on Diagnosis and ME and this week, I wanted to dip in a little deeper about another aspect. That of Isolation and ME.
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Ok, let’s begin!
To recap, I spent almost 10 years living with M.E. I was paralysed, bed-bound and wheelchair-bound. I had a car crash that helped me get back on my feet. Following last week’s episode about diagnosis, I mentioned the topic of Isolation and ME.
I believe this is one aspect that is usually overlooked when thinking about and discussing ME. In fact, there’s a movement called #Millionsmissing which aims to raise awareness of what it’s like to live with ME, to demand equality for all people with ME who have been stigmatised from healthcare and support, to demand effective treatment to manage the condition based on the best available evidence and to demand research funding commensurate to disease prevalence and burden. Really, to highlight that, although we may not be able to bang down doors and yell from the rooftops, we are still here and we need to be seen and heard.
Oh goodness, I appear to have jumped onto my soapbox quite early on in this week’s episode! Well, I’m not going to apologise for it!
What I will do, is take us back to me and my Isolation experience!
At 21 years old, I hadn’t long left college and had started a new job. I was making new friends and getting to know the business. Having been off work for a couple of weeks with my labyrinthitis, it wasn’t long until I lost contact with my new work colleagues. The phone calls from the HR team lasted for a couple of more weeks until my doctor was able to write a sick-line explaining a little about my ME and the impact it was having. Then the calls dropped dramatically and any updates or contact I had hoped to continue to have with my new work-life, disappeared. Before long, I was pretty much written off and, as it turned out, I didn’t have a job any more. On one hand, that was devastating – it was pretty much my first real life job out of college and the one that, I thought, was going to help me take over the world!
On the other hand, I wasn’t in any shape to even think about work let alone consider whether I would be able to go back or if I’d be able to pick up the friendships I’d started again.
But isn’t hindsight such a wonderful thing? Had I known that almost 10 years later I’d be able to work again, I’d have loved to have told them to just hold on to my job! But, alas, it was not meant to be.
Although I was working within the Hospitality industry, and it wasn’t overly conducive to an active social life, I did have some plans! Guess what? I lost those social plans. And not just because my labyrinthitis had progressed and I now had a variety of ME symptoms to deal with. I couldn’t tolerate light/sound or smell for very long but also, if I had been able to go out, the places I would have wanted to go weren’t wheelchair friendly. All of this really limited what I could do, where I could go and, let’s face it, how long I could be out for.
This was 1999 and some of the Disability guidance and laws that we have now, didn’t exist back then so if you couldn’t get in the door, there wasn’t much to be done! I have a distinct memory of being out for a shopping trip with Mum and her going into a coffee shop and placing a take-away order for us as I couldn’t get into the building in my wheelchair but we both needed to stop for a bit. I do believe she politely informed them about the changes in the law and the need to have some sort of ramp access for wheelchair users, whilst she was inside, and I waited outside! An unsung hero moment!
To top it off, there’s only so often a 21-year old’s friends will call or come knocking on the door to find out if you’re able to go out for the night before “normal” life catches up for them and you are left behind. I don’t blame them. They were starting out in their own adventure into proper adulthood. But it did sting. Why did they just get to decide to go out for the night on the spur of the moment, but I had to plan every detail of each day just to be sure I was able to eat a small meal?
Who decided that this condition was mine to bear and let them away with what seemed like a double set of fresh batteries that never ran down?
When would that be me?
When would my life actually start properly?
I don’t know about you but my whole world disappeared until I was left with only my bedroom. There were days when I couldn’t have anybody other than me in there and I would be there in the dark, wrapped up in my duvet, hoping that if I managed to sleep, I might wake up and be well again. Spoiler alert – that didn’t happen!
Although I didn’t know it, I felt alone. My friendship groups had disappeared and I barely saw the world outside of my own room. Mum became my constant and saw the good, the bad and the ugly. I needed something but I didn’t know what.
I can’t remember how I found it – it could have been something Mum discovered – but I came across a Charity called, Association of Young People with ME or AYME. This was a charity for children and young people up to the age of 25 with ME. It was a start. Here was somewhere that was specifically designed to help me and we made contact with them. I received a welcome pack that gave some really useful information leaflets and a magazine. Nothing too overwhelming. The leaflets and the magazine were written in a way that made them easily digestible on those days when I could only take in small amounts of information.
One of the best aspects of the magazine, was the pen pal page. I could read about others with ME. There were other people, similar in age and illness to me. And they were looking for a friend to help break their isolation. I was looking for the same.
When I was able, I plucked up the courage to write and send a letter – yes, good old pen and paper! And then I waited. Not only was I waiting for a response, but I had to wait for the person I wrote to, to have a good day. They would have to be able to read my letter and reply. And that could take a few days depending on what they were able to manage. All of this was via snail mail. No email at that point I’m afraid. About 10 days passed and I received a response. A lovely young lady from the south of England. We traded letters when we were able over the next year or so.
As tends to happen, technology began to take over. Letters became emails and I was able to connect with a few more MErs via the charity.
We also moved to something called online messaging via a system called ICQ (which stood for I seek you). This online chat function meant that a few of us were able to set a date and time and have real time text chat. It was very fancy for the time. I do realise that we take this kind of thing for granted now but I was ill pre-mainstream email and online messaging services! It was in the time of dial-up internet when you couldn’t be on the phone at the same time! So planning was important and that meant, saving up energy to be able to sit at the computer (no laptops or tablets in those days!) and chat for 30 mins with friends.
To this day, more than 20 years later, I still haven’t met the people I used to chat to online, in real life! We live hundreds of miles from each other but now connect via social media as well as birthday & Christmas cards.
These first tentative steps connecting with the Charity and other people they were supporting, led to a confidence boost for me and an outside interest. Within a few weeks, I offered to volunteer for the charity as part of their fundraising team. I then connected with many other members and could fit in the fundraising work on my good days.
Over the next couple of years, I helped members organise a number of fundraising events. I moved into the role of Fundraising Officer and was even able to attend both the Scottish Parliament and 10 Downing Street to speak about ME, raise awareness and, frankly, ask for money to establish additional services for people with ME.
All of this helped to break my feelings of Isolation and allowed me to make some meaningful connections all within my own capabilities & energy levels. The great thing about the charity was that they truly understood what it was like when I was having a bad spell and wasn’t able to do anything for them. They never put on any pressure or expectation for me to do anything other than look after myself.
Since my time with AYME, they have gone through a number of changes. The latest of which was being merged with Action for ME. Although AYME itself doesn’t exist as a charity, their work continues within Action for ME and I’m a firm supporter of theirs.
That brings me to a couple of points from today that I’d like you to take away from this:
1. You do not need to be alone in your ME. There are some very good organisations out there that can offer you support. One of which is Action for ME and you can find them at www.actionforme.org.uk – why not reach out to them?
2. Find something that works for you. It may be connecting online via social media, writing good old fashioned pen pal letters or having a text message exchange with someone when you’re able. You do not need to be in the same physical space with others to help break your isolation.
So that’s it for today everybody. I’ve shared my experiences of Isolation and ME and in doing so, chatted about the things I lost and how I found a way to connect with other people in a similar situation. I hope you find something that helps you.
Please review, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk