Living with a Disability
Living with a disability looks completely different to everyone, depending on who you are, what your disability is and how much it impacts you. Whatever your disability looks like, it is a part of your identity that sets you apart as unique – resourceful, capable, strong and able to adapt to whatever life throws at you.
Your disability may give you advantages that others don’t have – like the ability to think in different ways, process information differently and look outside the box.
A disabled body has to adapt to being used in a different way than other bodies, giving you different strengths and skills to others that will sometimes provide you with a unique advantage.
While these advantages do exist for many, some of you may be thinking “But my disability doesn’t give me any of those” and that’s a real and valid experience also. Some disabilities just suck, you don’t benefit from them in any way and the reality is that they just make your life harder.
If that’s the case for you, don’t feel like you have to find the positives in your experience or that you have to have a happy spin on your story to make others feel better about your experience.
It’s ok if you only have negative feelings about it. Your disability isn’t your identity and you can define who you are and find your happiness in other parts of your life.
If you’re struggling to stop your disability from impacting the things that make you happy, it may help if you talk to someone you trust and ask them to help you make a plan to minimise its impact on your life in those areas.
Finding support in friendships
Your disability can also give you all sorts of challenges on a daily basis. This is tough at times for everyone with disabilities but it can be especially hard when you’re young as you navigate different challenges than the other kids in school. It’s entirely normal and ok to feel like you’re struggling, and it’s important that you know you’re not alone.
Finding friends who identify with what you’re going through and will support and advocate for you is one of the biggest steps you can take to empower yourself and support your own mental wellbeing.
Having someone in your life who is where you’re at and gets what you’re going though because they’re living it too is incredibly empowering for both of you, and gives you the chance to create a friendship where you can support each other through not only the fun times but also the pain, the struggles and the frustrated vents.
Even if you don’t make that connection with someone, it can still be helpful to know that you’re not alone and to spend time with people who accept where you’re at and don’t ask you to explain your disability or be anything more than your authentic self.
You can find this connection in real life through support groups and communities like Phab, where you can find and connect with others going through the same experiences as you.
One thing you always need to remember is that your disability is not your identity. You are a smart, talented and likeable person in so many ways that have nothing to do with your disability. You are you first and your disability second, and when you find true friendships and healthy relationships, this is how these people will see you and relate to you.
Navigating the system
It can be really tough to get support for your mental health as a disabled person. To be honest, New Zealand’s medical and support systems are far from perfect and mental health professionals and disability professionals don’t work together or cross lanes with each other. For you, that can mean that if you seek support for your mental health, you may really struggle to get it as people may see your disability as the only thing you need support for, and refuse to acknowledge that your mental wellbeing is in need of very different care.
Getting a diagnosis and adequate support for our disability is a battle that can take years, and often once we finally achieve that, it’s taken so much fight and hard work that we settle for that and don’t try to seek out more help for other things like our mental health that are still struggling. People might tell us that it’s too hard, that we have too many problems and that they can’t cater to us.
As hard as it is to keep fighting for what you need, it’s so important not to give up – especially when it’s your mental health at stake.
If you have people in your life who can support you and advocate for you, this is where you can ask them for help. You are not a burden or a problem to people who care about you, so don’t let those thoughts hold you back from asking for help. You’re not supposed to do this alone!
An advocate is someone who supports you in achieving the outcomes you need by providing you with knowledge and support, amplifying your voice and – at times – speaking or acting on your behalf when you need them to.
When someone is advocating for you, whether it’s a parent, a teacher, a teacher aide or even a friend, it’s important to make sure that they are amplifying your voice rather than drowning you out.
If you feel like you aren’t being heard or respected by an advocate or that someone is speaking for you rather than with you, it’s important to address that. If you feel that you can talk to them directly, go for it, but if not, try telling someone you trust about how this person is making you feel and ask them to support you in having a conversation with them about how you need them to advocate for you respectfully.
If someone isn’t respecting you in the way they advocate for you and talking to them isn’t the answer, it’s also ok for you to ask for someone else to take over this role. When it’s a parent that may not always be possible, but don’t be afraid to have those conversations with the people you trust about what needs to happen for you to feel respected and supported.
At times you may just feel really sad about what you’re facing, what your friends can do that you can’t do, or what you’ve lost. It’s okay to feel down. It’s ok to be sad about your hospital appointments, about the pain you’re dealing with and the things you miss out on when you’re stuck at home recovering from another pain flare, relapse or procedure. You don’t have to get over it. You don’t have to put a smile on your face and you don’t have to pretend that you’ve got your shit together.
If your disability happened later in life (as in you weren’t born with it) there may be times when you feel really miserable about not being able to do everything you used to. It’s okay to feel all of these things and absolutely everyone going through this will feel the same at times. You are allowed to have bad days, to feel shitty and to hate what you’re experiencing. You’ll adjust to many aspects of your disability with time but you don’t have to feel anything positive about it right now.
It’s essential to remember that you are unique and important, that your disability is not a bad thing and that anyone who talks down to you or says unkind things about your disability is in the wrong.
While you may not be able to change your disability, you can reduce its impact on your daily life. There are some really good organisations that care about you and are here to support you. Check out Yes Disability services, Recreate disability services and have a look at this site also so you can fully understand your rights.
If you’ve been feeling down a lot lately or you think the impact of your disability is causing your mental health to suffer, the very best thing you can do is to talk to a trusted friend, a parent or a professional about how you’re feeling. Having someone to talk to about what you’re going through can make a huge difference and they can help you access services that will support you to improve your wellbeing.
We often tell ourselves that if we talk to someone, they will think we’re exaggerating our problems, being silly or giving them a burden to deal with. The thing is, this is almost never true! People care a lot more than we give them credit for, and if you speak to someone about what you’re struggling with, you’re likely to find that you have just unlocked the bonus of a caring supportive person who will help you get through your tough times.
Where to get help:
If you’re thinking about harming yourself or are having suicidal thoughts, call Lifeline on 0508 82 88 65 now to talk to someone who cares and can support you.