For years, I’ve struggled to feel a sense of self worth. I’ve never been good at sport, because my disability has meant that I was never allowed to properly play most sports (and now I can’t even move enough to play). I can’t go to gym, again because of my disability; plus I get way too much enjoyment out of triple cream Brie; so I have a few extra love handles and my body is all weird proportions. No matter what I do, or how many different things I try, I feel like I’m forever cursed to have bad skin. And because of all that, I have never felt typically attractive, and, as a result, have felt largely excluded and separated from the gay community.

To add to this, because of my disability, I am incredibly dependent on others to assist me. I can’t make a meal, or put my clothes on, or do many of the other ordinary daily things we all have to do, without a large amount of assistance. I can only do a few very limited things by myself, independently. I sometimes feel like I am so dependent on others, and yet I can do nothing in return to help them.

In addition, I now move around in the slowest, most painfully awkward manner. And still, every time I sit in my wheelchair, I feel like it’s an invisibility cloak. As soon as I am in it people no longer see me. No matter that I’m a fully qualified lawyer who lives in his own apartment. People still turn to whoever is with me to ask about me, rather than asking me. And people wonder why I don’t like using it.

In my darkest hours, I have felt like I am forever destined to be alone, and unhappy, and useless, and that I am worthless. How could someone else ever love me – so why should I bother trying to?

It can take all my strength sometimes, when I start going down this spiral, to catch myself and remember my blessings.

Sure, I may not be typically fit, or skinny, or masculine, or attractive – but I was born with a decent brain that has allowed me to far surpass what many people told mum and dad I would be capable of in my lifetime. There are many, including many with disabilities, who have not had the opportunities that I have had to assist me in getting where I am in my career – to be able to go to good schools and meet the people I have along the way.

I also am the very opposite of alone. I may not ever have a partner, and that’s ok. But I do have an amazing network of loved ones, family, friends, colleagues, and more, who have joined me on my journey. We really don’t need a single, special person when we are able to realise that we have so many amazing and wonderful people who are there with us, and for us, and who bring so much love, happiness and kindness into our lives.

And more than that, for myself, I have to realise that my situation doesn’t render me unhappy, or alone, or useless. Only my attitude does. I am worth something. I could have taken my blessings, squandered them, and accomplished nothing. But I didn’t. I could have sat at mum and dads and given into the fear that comes with a progressive disability, and not bothered even trying to go to uni or get a job. But I didn’t. I confront my fears, and I go out into the world, and I get on with my life. I may not ever be physically fit, but my determination is 100 kilograms of pure muscle.

It can be very hard to remember when we’re in our darkest mindsets. But we always need to try and remind ourselves to be proud of who we are and what we’ve accomplished. We are all unique, special, amazing, and beautiful individuals. 

It’s really not a great time to be an extrovert at the moment. Many people out there are struggling with these new rules about social isolation. People are regularly posting on social media about how it’s driving them crazy, or angry, and how much this new normal really sucks. But what many fail to realise is that there are some who have been forced to deal with unintended social isolation long before the existence of COVID.

For those like me; who live with a progressive, physical condition; isolation has been a part of our lives for sometime, and will continue to be a part of our lives long after the rest of the world has forgotten about what they had to do to survive this pandemic. For most, once this is over, and social gathering restrictions are relaxed around the world, they can go back to their normal routine of going to work and then going out – eating, dancing, socialising, partying, whatever they want to do. For me, it’s not that simple.

While I am able to do some of those things, sometimes, there are many more logistical issues to consider, and those issues are regularly changing due to the progressive nature of my condition. It’s like playing a board game, and every time you finally figure out the rules, the rules completely change and you have to go back to square one. Sometimes, these issues will become too overwhelming, and then despite my desire to go out and be social, I won’t be able to. Yes, technically it’s a choice for me not to go, but it doesn’t feel like a choice at the time. Also, sometimes it’s worse, and the pain and exhaustion is too much that you can’t face going. Also, sadly, sometimes it isn’t a choice and you are physically unable to do what all your friends are doing, but you don’t want to stop them as you know they love doing it and you used to love it too. These are some incredibly emotional and disheartening conversations to have with yourself. On top of all this, thanks to FOP, I have more limited energy nowadays and have to prioritise conserving that energy for my job.

As a result, I’ve needed to learn some coping mechanisms. And I thought that some of these mechanisms might be useful to others, as we adapt to these unusual times with everyone isolated.

1. Do things that bring you joy – even if it’s small – and find a creative outlet. Every couple of days, I like to pamper myself with a nice face mask, pop on a guilty pleasure TV show and relax. Kind of like my version of meditation. Find yours. I’ve heard of people at the moment starting to bake or cook, or pick their paintbrush back up, for the first time in ages. I’ve heard of some starting to learn knitting or a new language; I even have a friend who’s started DJing. Clothes are still one of my creative outlets, but that has become less important as nowadays I go from daytime pyjamas to nighttime pyjamas almost every day. But I can still get a bit dressed up sometimes, like when I put on some of my usual clothes to have a Skype catch up with friends. I didn’t have to, and they probably didn’t notice, but I did it for myself. It brought some semblance of normalcy and joy for me. The point is, whatever you think would work for you, give it a go. And if you don’t have one already, try something new. It looks like we’ll be living like this for awhile, so try out as many new things as you can until you find your ‘thing’!
2. While it certainly can’t replace actual, in-person contact with other people, there are more options now than ever before to help you reach out to people and stay in touch with friends, colleagues and loved ones. With Facebook, Instagram, Skype, FaceTime, Zoom, and any other number of mediums to do so, don’t forget to maintain your relationships. Also, if you do live with someone, be kind to them as you’ll probably be stuck together in social isolation for awhile. For me, this is giving my sister a small glimpse into my struggles. Also, I know some of what she’s struggling with adapting to this new norm, as I had to adapt the same way long ago. This gives me more empathy when she’s having a bad day. If you and your partner/friend/roommate are both new to this, remember that you’re both facing some of the same struggles. Be quick to forgive each other if you hit a road bump, try not to take it out on them if you’re having a bad day (as chances are they might be too), and don’t forget to make time to spend together. Like over this past weekend, when my sister and I spent ages playing games on the Wii together (things that make you both laugh are encouraged in this instance!).
3. Finally, I read a post the other day that really resonated with me. Staying positive isn’t about being outwardly happy all the time. That would be a miracle for anyone! But don’t lose hope that better days are coming. I’ve found my hope wavering of late, because it has been just so much to deal with, with my physical disability continuing its relentless claim over my independence and taking so much from me the last few years. But I haven’t given up yet. Hope can be a tiny little ray or, for some people it may come more easily. However much you have, hold onto it dearly. There is still magic and beauty left in the world, and better days will come soon enough. Be patient.

Hopefully you find some of these tips helpful! Don’t hesitate to reach out.