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.
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“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.”
“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.”
Couldn’t have said it better myself. And THIS is what I am trying to find in the “PANS community”. Not someone to ask for whether I’ve tried a certain antibiotic or mold treatment when I’m hearing it for about the five hundredth time, but someone to discuss these parts of me that I’m trying to get back, and help me find them again, because it’s often too hard to do it alone. And I want to do the same for someone else. Talking with people in my field who don’t have these issues doesn’t cut it, there’s so much they don’t get, and neither does talking to “walking Lyme/PANS cases” who act like they don’t have anything else to their lives.
That’s why, if there’s somewhere I have to skimp on detail in order to maintain privacy, it won’t be about my passions and my struggle to find my place in my field, it will be the nitty gritty aspects of my treatment regimens and gory details of my symptoms that will have to get left out. And I don’t even think knowing these is that important to understanding where I’m coming from as long as people understand I do have PANS. Yet I see nearly everyone else in the PANS community doing the exact opposite and it makes me feel very discouraged.
Actually, I’ve decided that I will pursue this firstly by messaging people on Facebook in the PANS community, and hopefully later by starting a Youtube channel. I think that’s a better format given how my blog started out and the fact that I did start it with somewhat of a different tone that it’s hard to go back on.
I get it. I think a lot of it is people in the PANS community who spend time on the Facebook groups are in survival mode and not necessarily in a mental state to be thinking about friends. A lot of them really are just on there to read about treatments, and they don’t have the emotional space to make genuine connections. Many are still sick enough that they don’t have much else to their lives. I know I used to try to forget about my “real” life when I was really bad off because it was too painful to remember what I used to be like.
There seems to be a need for some kind of community where people with neuroimmune illnesses can just make friends with people who understand what they’re going through but not have every conversation be about treatments. That’s a bit of what I had in mind when I was doing my phone support group for a while, but I wasn’t getting enough attendees. I might restart it again. I have sent some fellow adults with PANS to your blog, so I hope they will reach out to you. I will definitely send people to you I encounter who are looking for the kind of friendships you mention.
Honestly, part of why I’m feeling burned out on my blog is that I don’t talk about my career and a lot of the things I’m most passionate about. I do this for privacy and also so that my readers can better project themselves into my writing since I’m nondescript. But now that I’m getting healthier, it’s starting to feel one-dimensional to leave out huge parts of my life. I do hear you and feel the same in a lot of ways. My problem is that I’m not ready to give up my privacy. As my blog becomes more popular, it’s becoming more likely that some people who find it might know me in real life. The more details about myself I reveal, the more likely it is that these people may be able to recognize that it’s me. I’m not ashamed of what I’ve been through, but it’s precisely BECAUSE I feel there’s so much more to who I am than my illnesses that I worry about people finding a blog where I’ve talked so much about my illnesses and worry about them seeing me differently as a result. If I knew everything on here would stay within the neuroimmune/chronic illness community, I would talk about more of the rest of my life for sure. I wonder if there’s a middle ground. I don’t know what the answer is in my case. I’m probably more worried than I should be.
P.S. I’m just now getting around to reading your latest posts. Well done! I wanted to have the chance to sit down and leave thoughtful comments, so I’m working on it.
Best wishes for your bright future!
Thank you!
Congratulations on the 6 yr anniversary of your blog! Thank you for your blog, for the light you shed on everything, and your efforts to help others. It is no small feat to have accomplished what you have, including not losing yourself, while sharing so much of yourself, knowing what your passion is career wise, making it happen, despite a variety of hardships. You have helped me understand so much, and you give me hope for my sons, who both have this too, as do I – and we certainly are adults now. I respect the hell out of you putting your energy and self towards what is most important to you. It is so important to your survival and wellness, especially when you don’t have a full battery all of the time. It is essential. HUGS and best wishes for continued wellness and following your dreams and making them happen!
Thanks so much, Stacey!
Firstly, a huge congratulations & Happy Blogiversary!!
Secondly, I think it’s fantastic that during remission you’ve been able to rediscover yourself and gradually find your passions again, that’s incredible. I think you do fantastic keeping up with your blog as well as your career, your health, your book, all of it. But then you add in the messages as well and it’s not surprising things get overwhelming. I have found many points now where I’ve felt burnt out and over my head and overwhelmed, and you have more going on than me. For what it’s worth, I think you’re doing the right thing as long as you’re putting your needs first and trying to see how best to balance things. If that means stepping back a little from the blog then do that, your readers are just going to want you as well as possible, mentally and physically. Blogging is great, but many people don’t seem to realise just how much goes in to it and all the attached things to deal with, from social media to emails. Do what’s right for you. It’s exciting times ahead and you want the energy to do the things you want and need to do, it’s going to be awesome! 🌷
Sending hugs,
Caz xx
Thanks so much! This is all great advice. I’m hoping having a FAQ page will take care of a lot of the messages. I hope you’re finding a way to fight the burnout yourself!