Recently some people have asked me: why did my blog change with the release of my book?
Why did I stop telling personal stories about my day-to-day experience with chronic illness? Where were my posts about dealing with doctors who thought I was faking my disease and why wasn’t I posting more in-depth about my personal life?
For the last six years you’ve basically seen me totally exposed on this blog. I’ve shared some of my most humbling moments—moments I chose to share because I wanted other people to know that these moments dealing with a chronic disease were universal. I also wanted to help myself by reaching out for support. I wanted to feel heard and supported when few people in my life could understand what it was to live with this kind of constant reality.
But thanks to this blog—that reality changed for me. By sharing my story, the people in my life had a greater understanding of what my disease meant. And I learned a LOT of big life lessons that I’d like to sum up here:
- People were shitty about my disease not because they, themselves, were shitty people. They just didn’t understand the complexity of my situation. With a little encouragement and guidance, they have the capacity to understand what I’m dealing with.
- Friends weren’t bad friends because they were bad people. They were just putting in the same amount of time and effort into our friendship as I was able to put into our friendship—and with an all-consuming chronic illness, that was generally ZERO effort. Understanding that made me a whole lot less butt-hurt, and a whole lot more realistic about relationships being a two-way street.
- Doctors didn’t understand my situation because there aren’t a lot of patients like me, because diseases like mine present differently at different stages and in different people, and it is encouraged in our medical system to treat complex patients by not treating them with compassion. Which is why instead of spending all of my time angsting about it—I’m working with advocacy organizations and medical education organizations to educate—not blame.
By publishing the book—I was able to share these lessons, a ton of advice, and all of my painful/personal stories with the world in a way that I feel will truly make a HUGE difference for patients. I feel confident that the sacrifices I made in my personal privacy to share my story was worth what it will give to readers for years to come. (It doesn’t mean I’m done sharing advice! Just that a good chunk of it has now been made accessible on a really mass level.)
So you may see less of that personal whirlwind here.
Does this mean I don’t still have awful days with a chronic illness?
Shit no. I have bad, bad days still.
I’ve just worked really hard to make physically bad or medically-stressfully-bad days—just that. And I try and focus instead on having a good career day, or a good family day or something as simple as a good hair day.
I don’t walk around with the sun shining out of my butt or tell people with chronic, rare, incurable diseases that they too should find their chill and find their happier place.
It’s not my place to tell you to look for the happy place when you’re vomiting at 2AM and your nerves are on fire. If someone were to tell me that in that moment I would find the strength through the nausea to punch them in the face.
I’m just saying that I’m trying to find different ways to be a role model in this chronic illness community. My readers used to come here to laugh and to cry and to commiserate.
I still want to provide those outlets for you—but I want to give something more here than just insight into the life of someone who is also suffering.
I want to showcase some of the ways we can thrive when we’re under the 9,000000 pound weight that is our disease.
So yes, I’m hyping a book I wrote about all the tools I learned (and that other patients supplied) on how to get through this with confidence, and hope, and maybe even a little dignity.
And I’m poking people to contribute their stories for my ChronicallyEmployed.com site because I want to talk about working and independence when your disease is draining your bank account and you’re too sick for a real nine-to-five.
And I’m jumping up and down trying to attract patients towards research opportunities because hey—if we learned anything about my experience with the medical community over the last several years its’ that they don’t know enough to fix things—yet. And they won’t ever know enough unless we shove our case histories and patient data down their throats.
This has been…probably the most exhausting few months of my life so far and the posts here have been thin to say the least. But now that the book has launched I do have a giant list of blog posts I’m working on—content that’s going back to the focus of tips and advice for living with chronic illness.
But there is a little something that has to change.
I can’t share every detail of my day-to-day medical drama like I used to do. I know it’s fascinating—and I know some of you have come to lurk for the juicy details which is why I share bits and pieces on instagram still.
The promise I made to my readers, to the people who have followed this blog was simple:
I want to help you feel better.
Here’s what I didn’t promise: a rehashing of my deeply personal, worst moments for all eternity.
I never signed my privacy away or agreed to snap a picture before cleaning up the blood or publish a post after every painful, soul-crushing doctor appointment.
I just promised to share what I knew would be useful in the end—when the anger, or bitterness or shame had leveled out a little. When I had a clearer head.
I’m still going to share what I learn (and if you’ve been following the “book hype” posts) you’ll see that’s what I’ve been doing through things like this interview with Through the Cracks or the webinar on how to manage your career with chronic symptoms you can no longer hide or ignore.
I hope that you can forgive the idea that you can’t have all of me anymore, as “all of me” no longer consists of just the challenges of my chronic illness.
It isn’t all of who YOU are either.
And if we can agree on that—then there’s always going to be more here for you to keep learning and laughing from.
So stick around. I’ll still be here—working on new posts that are going to make your life a little less chaotic.
I’ve done a lot of talking. So now it’s your turn.