It’s Hard to be This Awesome All the Time

Let me just tell you something...It’s hard to be this awesome all the time!

I wake up awesome, I go to work awesome, I eat my meals, and go to sleep just as awesome. Let’s face it, I’m pretty awesome!

I might be tooting my own horn, but I seriously try to be as awesome as I can in everything I do! Especially when it comes to AS patient leadership.

I started my support group in 2007 and have been supporting, advising, writing, recording, acting, creating, and speaking ever since. Whatever I can do to help my community and raise awareness.

But then, it finally happened...My awesomeness faded. I got tired of always being on top of every leadership opportunity. My love for my community never faded, but my ability to show it became exhausting!

The term for what I am describing is known as “compassion fatigue.” When someone who cares stretches themselves too thin and they just don’t have the strength to carry everything they pick up.

This is what happened to me, and the reason why you haven’t seen my byline for a few months.

I want to talk about my experience with compassion fatigue and give some tips on how you can avoid it.

Compassion fatigue and me

Like I said above, I’m pretty awesome!

Whether or not this is always true doesn’t matter, it is how I choose to feel about myself.

I wrote about this in my article “Love Yourself” and the “delightful touch of narcissism” that we all must have to keep going through life. Outward in thinking. Our bodies suck on the inside, so we need to have a more positive view of ourselves on the outside. Walk through life with a permanent Instagram filter.

But, having the filter was not enough for me, I needed an audience to appreciate me. And that is where compassion fatigue gets its hold.

In order to keep people loving me, I needed to keep going and doing more and more projects so people can see how awesome I am! That I could be the face of AS! Every speaking, writing, filming, and leading opportunity I received, I took! I saw it as “building my brand” as an advocate. And once I branded myself and got a good following, I could grow in the level of opportunities and finally reach my main goal of making ankylosing spondylitis (or axial spondyloarthritis) a long, difficult to pronounce household name.

Well, add in Covid, a full-time job, and dishes that needed to be cleaned, I just lost all my energy!

I overcommitted myself in all areas of my life, and instead of dropping a few projects here and there, I dropped them all.

Moderating my support group became exhausting, writing stopped, there was no motivation to continue my art or podcast. I couldn’t even respond to people on Facebook Messenger. Any joy and excitement I had for patient leadership vanished!

Eventually, I just couldn’t keep ignoring my commitments.

I needed to pick up my gloves and fight.

So, how does one combat compassion fatigue?

Just say “no”

Motivational speaker types will tell you that “no” is a dirty word, however, I care to differ. “No” is the first step towards blissful self-preservation.

As a patient advocate, you don’t have to accept every opportunity that presents itself. Yes, it may be flattering that Patient Organization XYZ wants you to be a group moderator or to do a series of posts promoting their event, but if you know you don’t have the time to commit, just say “no”.

And I know what you might be thinking: “But, Jed, what if I turn this down and no more offers ever come in?” I've been there, I've sat on airplanes wondering if the project I just finished will be my last. Well, I can assure you, more opportunities will come in. There is always a need and even if you don't get a ton of offers, find an organization and offer yourself once you have the time.

Saying “no” to one thing doesn’t mean you’re saying “no” to everything.

Build a team

“No man is an island.” -John Donne

For many years, I tried to do everything alone. When it came to getting things done, I knew I could trust myself. If things go wrong, I only have myself to blame, and for the most part, I’m pretty forgiving.

For the first 12 years of my online support group, I did everything by myself. I approved 100 posts and sorted through 50+ membership requests a day. When people found a comment offensive I had to check it out and determine if the member should be removed. It was a full-time job on top of my full-time job!

Then I reached my limit, I accepted that I needed help. I looked through my membership and found three AS patient advocates that I trust to moderate and uphold the vision of the group.

It was the best move I could have made. With their help the group continued to grow, more posts and members were approved and I didn't always have to be the one to put out the fires.

If you have a group, organization, blog, or whatever, get some help!

Spread the love

Starting out, my best opportunities were handed to me by other advocates who learned to say “no”. They were already established in their brand and knew their limits. When an opportunity came along that they knew they couldn’t commit to, they asked me if I wanted to give it a try.

Even though these were “hand me downs” they were totally “Gucci!” I got to work on some pretty incredible projects through the kindness of others.

If you are feeling like you are stretched too thin, find a fellow patient who you think might be a good fit. There really is no better feeling than writing one of your patient friends and asking if they would like to write for, travel to, or speak at some amazing group or convention that is looking for people like them.

You make them feel seen and you get to scrape a little off your plate. It’s a win/win!

And even if you don’t know anyone who is a good fit, why should that be your problem? A lot of these organizations and companies have people who are paid to find “talent”. You are not the only AS patient advocate out there. Our community has millions of members, you aren’t leaving them high and dry by saying “no”.

Don’t step out of your comfort zone

I am not a Tik Toker no matter how cool I think it is. I am not the guy who is going to march on Washington. And, I am not going to call anyone asking for donations.

These things are not in my comfort zone!

If I am asked to do something I don’t think I’m the right fit for, I can say “No” without hesitation. But, as I wrote in the previous section, there are others out there! There are people who feel at home marching on the capital for awareness or change. There are people with creative minds to use Tik Tok to educate the community. And I’m sure there is someone who actually enjoys cold calling people.

I will never understand how people do these things, but I don’t have to, because they are the ones doing it.

Don’t let compassion Fatigue get the best of you!

I stretched myself too thin, and my love of patient leadership fell through a weak spot.

Overcommitting put too much pressure on myself. I thought I was alone, and I needed to carry the community by myself.

Not true!

Being a patient leader and advocate is one of the best feelings in the world and I know it is my life’s calling.

I’m sure many of you reading this feel the same way. But, if you find yourself overcommitted, and sapped of your compassion. Share the burden, say “no”, and get a team.

Even awesome people need help.