Ten days ago, on my actual blogversary, I had a nice 6-year anniversary post planned—the usual reflection on how I started blogging and how much it means to me. And I still stand by my belief that making this website and chronicling my journey through neuroimmune conditions and their psychiatric consequences has been one of the most meaningful things I’ve ever done.
But I somehow could not bring this post in for a landing, which tends to happen when I feel like I have to post something rather than feeling inspired. So I stepped back and thought about what was going on. And now it’s time to be honest…
I’m getting a little burned out.
The reasons for this are very complicated. But for one thing, the need for information and support related to PANS in adults and teenagers is more than I can provide on my own with this website. As awareness increases, more people are trying to investigate if they might have PANS, but there still aren’t enough providers who treat it. So people look for support wherever they can get it. I try to answer every message I receive, but I’m getting so many that it’s sometimes taking a couple of weeks for me to respond. Please bear with me!
I’m working on a FAQ page and a few posts on subjects that people ask me about a lot, so maybe this will answer a lot of the questions. It’s a win-win: you will get answers faster, and I will expend less energy, which I have to ration carefully.
To be clear, I’m not saying that the messages themselves are what burn me out. In fact, it’s often the messages that keep me going because you all tell me that what I’m doing on here is having an impact. There have been a few times in recent months when I’ve thought about stopping only to open my inbox and read a message from someone saying my writing was helpful. So then I’m convinced I must keep going.
What burns me out is realizing that I can’t do enough to help people. There are too many people who need help, and there’s only one me. I’m incredibly discouraged when I feel like a certain organization I won’t name continues to focus on children and only occasionally tosses out a bone for teenagers and adults who have PANS/PANDAS. I know these people read my blog from time to time, and I wish they would listen to my post about “Why Ignoring Adults with PANS Hurts Everybody.” So sometimes I feel like I’m fighting a losing battle.
Even so, this isn’t enough to stop me, because I also see plenty of organizations and individuals starting to do better than they were six years ago, acknowledging that people of any age can have my condition. I see organizations amplifying the voices of teens and adults rather than only talking to parents of young kids. I see organizations going out of their way to say that children aren’t the only ones affected. So I like to hope that people like me who have been speaking out have played a role in these changes.
There’s something else that’s kept me from my blog lately: my career.
I love writing, and I do intend to do it in one form or another for the rest of my life. However, there’s another field that I’m even more passionate about and have spent years pursuing. I’ve pretty much known what I wanted to do with my life for a long time. Let’s just say that being sick and unable to go to public school wasn’t the only reason I started community college so young.
After I fell apart at eighteen, I struggled through university in this field that PANS managed to make me hate at times. There was quite a bit of internal conflict because the real me still knew what I would do if I were well, but the sick me didn’t think I would ever get to that point again. The full joy was not there for years, and for a long time I thought about ditching it all and writing full-time. Yet I had enough faith, or at least some hope, that caused me to stand my ground and stay on the path I was on.
I have essentially been in remission from PANS for at least year and a half now, and every month that goes by, I learn more about who I actually am. As I’ve said many times, getting better isn’t just about having fewer symptoms. For many of us, it’s about regaining those unquantifiable qualities that make you who you are—the qualities of your personality that were obscured by your inflamed brain.
In the last few months, I’ve had a cataclysmic shift in which I’ve rediscovered the passion for my field. Getting a job that I love hasn’t hurt, and I believe this shift is also because I’m finally not depressed. I’m finally just myself. And I see so clearly that my struggle through college was not in vain.
Now that I’m getting so much better, this is my time to go after my dreams after being held back by PANS for so many years. I’m so excited that I can hardly contain it at times, and I’m ready to make up for lost time. I hope you will celebrate with me that I have recovered to the point where I’m able to pursue the life I want and enjoy it!
I’m not saying I’m quitting my blog. I am saying that it has to take the back seat sometimes in order for me to do everything I was meant to do. I’m not entirely sure what this looks like yet. Maybe it’s more of a mindset on my part, and you won’t notice anything different. But I still have limited energy thanks to M.E., so I have to use it wisely.
I’m still writing my first book!
It covers how to excel in college with chronic illnesses and disabilities. I don’t know exactly when it’s coming out, but my goal is to finish and publish it within the next year. I also hope to maintain my 6-year streak of posting on this blog at least once a month.
My greatest hope, however, is that more and more organizations will continue to step up and help raise awareness of neuroimmune disorders in people of ALL AGES. We need more voices to advocate, not just for kids with PANS/PANDAS, but for teenagers and adults. The bigger the tent, the harder it is for the medical community and lawmakers to ignore.
Thank you, to all of you who have supported me over the years and helped me get through the darkest times of my life. I will be forever grateful. I hope you will continue with me on this next phase of my journey even if at times you don’t hear from me for a few weeks. As I get farther and farther along with writing my book, I know there will be so much more to share and discuss.