Inspirational, Courageous Me?!

Someone told me today that I was an inspiration. It's not the first time.

In 2010, when I had the immense luck to be selected to go and work with giant pandas in China, a few journalists there even used the term "hero."

That's because I was there and able to do as much as my colleagues, while a year prior, I was mainly bedridden and had to use a wheelchair.

They were impressed because I got better, having fought hard for many years to get a diagnosis and treatment. "Hero" was definitely exaggerated, of course, and, might I add, kind of embarrassing!

Don't let my sunny disposition fool you

We hear a lot about "inspiration porn" when it's finding the disabled "inspirational" for just living. Which is wrong, and this isn't it.

The Chinese media and the person saying I was an inspiration were talking about being inspiring for going beyond and trying to change things. I've also been told I'm inspiring because I'm able to find joy even on a really bad day physically.

I appreciate the compliments, and it's nice to feel I help others or that some people look up to me (not something I ever could imagine!), but it's essential to me that people realize it's not all sunshine, even for people like me with the most sunshiny disposition.

There is no "right" way to be sick

Someone who struggles to accept a new diagnosis or life with the challenges it brings is not "wrong."

There is no right way to be sick. It's OK to not take part in any advocacy or fundraising, to just focus on something else. It's not our duty to educate others or be positive when we face adversity. The people who commend my positive attitude need to remember that I'm not always happy! I've had very dark moments, and when faced with a new diagnosis or serious health issue, for example, it takes me time to cope. As with grief, there is no "right" timeline or way to act.

Understanding and appreciating the sentiment doesn't mean I know how to respond, though!

What I DO know how to respond to...

Call me lazy, doubt the seriousness of my situation, attack me, ah then I know how to react! I can ignore it, of course. (And sometimes I do.) But it usually lights a fire in me: I can give facts, explain, and argue. It's basically why I started my awareness blog a decade ago, do public speaking, give interviews, and write here!

I want to raise awareness to improve things for myself and everyone else in a similar situation – people living with a rare disease, an orphan illness, or, more generally, people with invisible chronic illnesses. I get angry, so I react. And I KNOW how to react. Bias usually comes from ignorance, so I educate.

Accepting a compliment is another story

But dealing with such a compliment, being told I'm courageous, an inspiration, and those other words that are filled with such emotions, then no, I don't know how to react.

One reason is that I don't see myself as courageous! To me, someone courageous is facing danger and risking their lives to save another. Or someone defending democracy or a minority, facing possible consequences, like women in the Middle East who fight for girls' education. In my view, just surviving pain alone at home isn't courageous.

The power of our words

But I know. I can see it. I'm fighting in my own way. It's just, what can I reply when I'm told such powerful, beautiful things except, "Thank you," blushing and with tears in my eyes. I haven't found anything better.

So, for those who told me I inspired them and that I'm courageous, thank you. If my reaction disappointed you, maybe you get it now. These words touch me more than you can imagine, truly. It's overwhelming and deeply moving, and it gives me the strength to continue!

Do others see you as courageous or inspiring for living your life with a rare disease? How do you respond? How do their words make you feel? Share with our community in the comments below.