10 Ways To Self-Advocate
Last updated: January 2023
We talk a lot about spreading awareness and advocacy in this community, and while both are so important, in order to do these we need to first be able to advocate for ourselves.
While advocacy is about speaking up for others, self-advocacy is about speaking up for yourself. It means understanding your needs and helping others to understand them, too.
1. Believe in yourself
Before you can even begin to advocate for yourself, you need to have belief in yourself. This means understanding that having a chronic illness does not make you less than anyone else and that you deserve the same respect as anyone else.
2. Practice self-care
As much as this is probably something that we are tired of hearing, deep down we understand that it’s because we need to be reminded from time to time. With a condition like narcolepsy, it’s easy to push our limits sometimes, however unintentional it may be.
3. Do your research
Doing your research is one of the most important ways to self-advocate. Whether it be researching our condition, treatment options, doctors, or even what communities are out there. It’s all important. You can never have too much information.
4. Connect with others
For me, personally, connecting with other people going through the same struggles has been one of the things I’ve found that has benefitted me most of all. Connecting with others is crucial. Finding a community or support group can do nothing but help you to feel heard and understood.
5. Set boundaries
Setting boundaries is a must when living with narcolepsy. We live with a limiting condition and, unfortunately, we must set limits, too. No matter how much people pressure you to do what they do, only you know what’s right for you.
And we need to do this without feeling guilty or ashamed, because only we know what we struggle with on a daily basis.
6. Write things down
Writing things down is great for so many reasons. Not only does it help us to remember things we may forget sometimes, but it also works as a support tool at medical appointments. An added bonus is that writing things down has also been said to be beneficial for our mental health.
7. Take your time
Take as much time as you need, whether it’s to think before answering a doctor’s question or trying to come to terms with this condition. Whatever it is, take whatever time you need.
8. Know your rights
There are many countries now where narcolepsy is legally recognised as a disability and protected under the law. It’s important to find out what your rights are so that you can utilise every single bit of aid that could improve your quality of life.
9. Express yourself
Don’t keep things bottled up! If someone says something about narcolepsy that you find upsetting or offensive, let them know. None of us can read minds, and some people aren’t always aware of how the things they say might be hurtful to others. Telling people how you feel will not only help your own mental health, but it could also maybe prevent it from happening again.
10. Never give up
Sometimes life can feel hopeless, and it’s hard to even find a reason for why we are here. We all have these moments. For some it lasts longer; for others, it comes and goes, but we all feel it. However, we need to keep fighting no matter what. Try to find something that makes you want to keep going, even if not for yourself but for someone else.
Every one of us has the opportunity to make a difference in this world, and even though it’s hard, it’s important to focus on what we can do instead of everything that we can’t.
Do you have any other ways that you advocate for yourself? Please share them with us!
Did you know you can read advice and stories from other community members in our new Community Hub?