🌱 Healing doesn’t rush. It blooms when it’s ready.
DEAR MYOSITIS COMMUNITY
Hello world.
I have something I want to say to all the Myositis patients of the world.
Every day, I read posts in social media groups, and it makes me sad.
The negativity—and the lack of self-belief—is overwhelming.
Yes, there are many positives in these groups. Truly.
But I want to talk about the negatives first.
Maybe then, together, we can turn those negatives into positives.
What am I talking about?
When I read these posts, I can feel the grief, pain, and anger—
even when someone is trying to be supportive.
They. Me. Maybe even you.
We are all consumed by grief.
These communities try to be positive and encouraging, yet sometimes—and unfortunately most of the time—a positive message is masked by the negativity surrounding it.
It’s the war stories.
The who, what, and why of our illnesses.
That’s not really a lift-up, is it?
Sometimes it feels more like a step back.
I know we don’t do this intentionally. No one wants to see someone else suffer.
Yet it happens every day.
We simply don’t see—or think about—what we just typed.
I get it. I’ve been there.
I got the award.
I also see a lot of labeling.
The idea that because my version of this illness is different from yours, then anything I offer couldn’t possibly help you.
And yes, I know there is some truth to that.
Everyone’s journey is different.
But I don’t see it as a fact.
I see it as a label.
In my experience, there are very few real facts. Let’s be honest—doctors don’t really know much about most diseases, much less Myositis.
They have theories.
But they don’t know.
When you label yourself, you are speaking that truth over your body.
Your body hears it.
Believes it.
And then accepts it as reality.
Because you told it so.
What you say has a profound effect on your body, mind, and spirit.
Please don’t do this. I plead with you.
Pause. Think. Refrain—especially in the moment.
Yes, your body is fighting you.
But not because it wants to.
It’s confused.
What does Myositis treatment actually do?
It suppresses the immune system—essentially tricking your body into not attacking itself.
Why is it attacking itself?
Because it’s confused.
It thinks it needs to.
And when you label yourself, you’re telling your body it’s okay to stay confused.
Your body trusts you.
It believes you know what’s best.
Because you tell it what to do.
Think about that.
What do you really want to tell your body?
The human body is amazing.
A person can cut themselves, and days later the wound is healed and gone.
That’s incredible.
I’m amazing.
I’m strong.
I’m fit.
I’m healthy.
I’m well.
I may not be able to walk today—but I will soon.
Maybe I can’t get out of this bed today—but I will soon.
You have to speak what you want.
Otherwise, nothing changes.
Your body wants to heal itself.
Help it do what it wants to do.
Say what you want.
Believe what you want.
Do what your body needs.
You are a team.
And teams require teamwork.
So let’s get to work.
How I Do It
Over the years, I’ve gone from using a walker to riding my bike and playing golf—more than once.
It’s not easy.
And yes, I still struggle with many physical limitations.
It’s not perfect.
But I work hard to be the best version of myself with what I’ve been given.
Number one: I stay positive and believe recovery is possible.
I eat foods that support my health and recovery.
I stretch every day.
I move every day.
And yes—I push myself to work out nearly every day.
I need it. I crave it.
It’s not just the treatments.
Yes, they help.
Yes, it took years to find the right one.
Yes, I’ve spent years tweaking every tiny detail.
I think my ADHD has actually been a blessing here.
It allows me to hyper-focus on the small things—to get obsessed with details.
And I channel that energy toward healing.
I read constantly.
I listen constantly.
I write constantly.
I speak nothing but positivity over my body.
I fill my thoughts with so much hope that there isn’t room for anything else.
But it’s not perfect.
I’m not perfect.
I have bad days.
Bad weeks.
Even bad months where I barely leave the house.
I fall off track.
I spiral.
But somehow, I find my way back.
I forgive myself.
And I start again.
That’s all I can do.
And that’s all you can do too.
We only get one shot at this life.
Let’s make it a good one.
