(Press CC for captions on the video)

When you live with a rare and complicated illness like Meniere’s disease, there’s this constant sense that you’re fighting an unwinnable, uphill battle, and it’s terrifying.

It creates this pressure cooker reality of pain and suffering and confusion and fear. A reality with an entirely new set of rules written in a language we can’t read.

But there’s a way to fight for your health that can actually make a difference. And for better or worse, we have to be our own best advocates.

We have to accept that our current doctors may not be able to help us, or even necessarily know more than we do.

We have to accept that the people closest to us, the ones who actually want to help and support us, can never truly understand what we’re going through, and that that’s okay.

We have take responsibility for our health and coordinate our treatment.

Because no one’s ever going to care as much as we care. And no one will ever fight harder than we can fight.

How to be your own best advocate:

First you have to take the time understand your condition. Read and research and talk to others patients. Learn as much you can about what you’re going through.

I know that a lot of the information out there is negative and can make you feel more afraid. But don’t let that get you down. Find the information that makes you feel hopeful, that makes you feel like you have a fighting change.

You also have to find a great doctor, and you should never have to settle. Too many people have been let down by emotionless doctors who either don’t know enough to help, or worse, they know enough, but still leave you with a sense of hopelessness.

Being your own best advocate is also about paying closer attention to your body and how specific things make you feel. Our environment and lifestyle have direct consequences on our health… on our symptoms. And when we keep track of our environment, of our lifestyle, and how we feel each day, we can find the patterns. And we can avoid the things that make our symptoms worse. I’ve linked to a free tool below that will help you with this.

But being your own best advocate is also about perseverance and understanding that there’s more than one way to fight an uphill battle. Thomas Edison once said, “When you’ve exhausted all possibilities, remember this: you haven’t.”

Winning in the end is about never giving up. If something isn’t working for you, try something else. And focus your energy on things that are within your control.

And one more thing:

Josh Sundquist, a best-selling author, Paralympic skier, and motivational speaker often explains that his personal motto for success is “1MT 1MT”, which is short, for one more thing, one more time.

It means doing one more thing than you feel like doing. One more thing than you planned on doing. To Josh, the difference between failure and success, is often just doing one more thing, one more time.

You can do one more thing to improve your health. You can find one more doctor, try one more treatment, or read one more book.

No matter how bad things may seem in the moment, I want you to remember that you can always do one more thing, one more time.

That’s what being your own best advocate is all about.

  1. I am also in the fight and I try to stay positive then beat myself up when this disease gets the best of me…I would love to get over this hurdle so I maybe able to help others.

  2. Thank you. Had it for 17 years……… Suggestion due to many patients having Recruitment and Hyperacusis……your music is waaaaaay too loud. Please quiet it down some. Your message is important but I could not listen to it and had to read the cc’s instead, which is difficult to do when you have Nystagmus.

    • I’m sorry about that Nan, I had made the music so much quieter than it was originally. But I guess it was still too loud. I’ll definitely keep that in mind for next time.

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