A message to the disabled with MS

What I have to say is by no means groundbreaking but as someone who lives with sight loss, bladder disfunction, the inability to walk, and unpredictable tremors, I have a good idea of what a life with a disability can bring. There are certain things that I could have benefited from hearing myself in order to feel less alone.

Having a disability can introduce a unique set of challenges that you have to go through and some you never even imagined you would be dealing with. Whether you’re living with a disability yourself or if you know of someone living with a disability, perhaps reading on their behalf, whoever you are, I hope you can benefit in some way from what I have to say.

1. YOU ARE NOT A BURDEN

There have been many occasions when I felt like a burden. I would feel like I was a pain when I asked someone to help me out. At times I thought my impairments were an inconvenience for others, but looking back now, I know they are not and I want others to know that as well. There are many ways of adapting these days and there are so many people out there who are willing to help. You will never be a burden.

2. IT’S OK TO FEEL LIKE GIVING UP

Having a disability can leave some people feeling anxious, broken, lonely, isolated and scared. I say this because I’ve felt all of them for myself and they have made me feel like giving up. Having a disability can be a long and tough journey which requires a lot of adapting and I know of so many people connected to disabilities in some way who have felt like giving up.

I want you to know that feeling like this is ok. It’s normal, but if it gets too much, it’s important to seek help. Once I started to realize that the positives were coming closer to my reach, I learned how powerful they can be – there’s always a glimpse of positivity even when you least expect it.

3. DON’T BE AFRAID TO ASK FOR HELP

Asking for help is one of the best things you can do, if only my stubborn self realized the benefits of it sooner. I had a great lack of confidence which left me struggling with some thing because I didn’t want to ask for help.

Please don’t struggle. Make the most of the help that is offered to you and if you’re finding something difficult or tricky, a simple question asking for help can make things so much easier. I still need to remind myself of this very thing sometimes.

4. IT’S NORMAL TO FEEL CONFUSED

Living with a MS can be incredibly overwhelming at times. You’re introduced to an abundance of tools, mobility aids and equipment that people think might help and it can all seem very confusing. After I was diagnosed, everything seemed confusing. The future seemed unclear and it was a lot for me to come to terms with it.

But I want you to know that if you are also feeling confused about your disability and what it means for you and your life, it’s a completely normal feeling and, in time, that confusion will start to fade as you start to learn what you need, what help is the most necessary for you and how you can navigate the world with a disability in the most accessible way.

5. A MOBILITY AID CAN BE YOUR KEY TO INDEPENDENCE

Oh, how I used to hate my cane – the thought of going out in public with it used to make me feel incredibly anxious. But once I picked my cane up I slowly started to realize that it could be my key to the independence that I so desperately wanted and needed. Using a walker did the same thing along with a wheelchair.

It can be scary, it can seem daunting, yes sometimes incredibly daunting but if it gives you the independence you want or need. Doesn’t that outweigh all those other feelings? Embracing your mobility aid, whatever it might be, can be one of the most important steps in the road to acceptance and independence.

So, I might still have a few stares and glares but do they matter in the grand scheme of things? I’m out there on my own, being the independent person I want to be and you can be too. If you’re happy and confident when using your mobility aid then no one else’s opinion or judgement matters.

6. YOU CAN GET THROUGH THE DIFFICULT TIMES

You might feel defeated at times, you might feel like you’re swimming against the tide but you can champion and overcome the challenges that come your way. A disability seems to open the door to a whole new set of challenges, as if you don’t have enough to contend with already, right? But those challenges are there to be overcome and you are determined and strong enough to do just that.

Real life isn’t Hollywood. I will always have my bad days and so will you but that doesn’t mean you can’t get through them. You can come out stronger on the other side.

7. FIND YOUR UNIQUE WAY OF EXPRESSING YOURSELF

I’ve found my passion since starting Positive Living with MS, writing and blogging is my unique way of expressing myself and how I feel, but yours might be through art, music, crafts, or even building models or gardening.

Discovering that passion can potentially be invaluable, it gives you the opportunity to express who you really are and show that to others. It can be your lifeline when you’re finding things difficult. It can be your escape.

8. YOU CAN ACHIEVE AMAZING THINGS

Your disability shouldn’t be a barrier to achieving your goals. There is always an alternative way to getting where you want to be in life. If one road leads to a dead end, find another one and follow it until you reach where you want to be. People living with disabilities have dreams, hopes, goals and aspirations just like everyone else and you can achieve amazing things, never let anyone tell you otherwise.

9. DO WHATEVER IT IS YOU WANT TO DO

It’s your time to go out there and have fun. There are people out there who think that a life with a disability is a completely negative one, that having fun or achieving your goals doesn’t seem to tie in to a life with MS but it’s definitely not the case.

Disabilities can be restricting in some aspects but it doesn’t mean that you can’t go out there and have a good time. Do whatever it is that makes you happy.

Yes, there are people who won’t understand, there are people who will judge, who will make snide remarks and who will make incessant attempts to get you down but there are also people out there who will pick you back up again, who will support you, people who will have your back no matter what. It’s those people you need to focus your energy on.

10. YOU ARE NOT ALONE

This is one of the things I needed to hear the most a few years ago and perhaps one of the most important messages we need to be told. Disabilities can be isolating, especially for newly diagnosed people who are trying to come to grips with their diagnosis, the adaptions that need to be made and all the terminology that seems to come from every direction.

It can feel like you’re the only one experiencing what you’re going through. It can feel like no one around you understands the situation you’re in and how your disability is affecting you.

You might feel angry, frustrated, resentful, isolated, lonely, like you’re being left behind and maybe all sorts of other emotions. Please remember that even though it might feel like a lonely place right now, there are so many people out there who are in the same boat as you, who might be feeling exactly the same as you are right now, how you have felt in the past or how you might feel in the future.

The feeling of being ‘alone’ is more common than you think but it’s an emotion felt by thousands of other people and it’s what a lot of us need to remember. You are not alone.

Living with a disability can prove difficult no matter what your age. If you’re finding it difficult, I want you to know that although it can feel like life is throwing all sorts of hurdles your way, they can be hard to jump over but not impossible.

Although it can be difficult, a life with a disability can also be rewarding, it gives you a different perspective, it can let you see the world in a different way to others and help you to appreciate the little things in life.

Believe in your abilities, focus on what you can do rather than what you can’t, surround yourself with the right people, grab hold of the positives, express yourself in whatever way you wish and never let anyone tell you what you can’t do or achieve. You are capable of so much more than you realize. Take it from someone who knows.