Last week, I did something wild: I signed myself up for a multi-week professional development program.
I already have so much going on with finishing my book, but I’d applied a while ago to this selective program. So once they accepted me, how could I say no? Besides, I believe it will also indirectly help me with my book by making me structure my days better.
The fact I’m attempting this program is a big deal to me for a lot of reasons, but largely because of what it says about my mental state. For so many years while fighting PANS, I just didn’t have it in me to invest much in myself or my career. On the outside, my professors would praise my efforts because I was successful between flare-ups. On the inside, it was often half-hearted, and I constantly questioned if I even wanted to be in my field anymore or not.
How could I do any better? I lived in fight or flight with severe depression and brain fog all day every day during flares. In fact, I avoided trying to think about my future while I was sick. I was not myself at all. It hurt too much to remember my former goals and think about everything I was no longer able to do.
But then I got better from PANS.
Then the sun came out, and I started pursuing my dreams and passions again. I got a job in my field that I still enjoy. Despite having Myalgic Encephalomyelitis (ME) and thus working less than twenty hours per week, I have found enough workarounds that I’m still moving forward in my career and life.
When I was diagnosed with PANS, I thought I would get better and emerge unscathed. I thought everything would go back to how it was before. I thought I could just move on. As it turns out, it’s not always that simple. Doing this program has revealed the baggage of PANS in ways like never before.
The worst after-effect of PANS (which may or not actually be an after-effect) has been getting ME. I still hold that it’s no coincidence that I developed it just weeks after one of my worst PANS episodes ever. I think PANS damaged my immune system and/or part of my brain to produce those symptoms.
And boy does this program remind me of my impairments.
Some of it is watching videos, and about forty minutes in, it all stops making sense. I can’t think clearly anymore. I go to the den to tell my family I’m done for the day, but I’ve already forgotten why I’m in the room and what I was going to say. It’s the mental equivalent of your legs feeling like Jell-o after a particularly strenuous workout. Mind you, I got through a science degree that involved long lectures discussing difficult concepts and never had quite this issue. (In college, I did often completely check out during class and teach myself everything at home, so this is different.)
Admittedly, my confidence took a beating when I got an automated email from the course encouraging me to work ahead if I felt like it and to watch as many videos as I liked… And I couldn’t even finish this week’s assigned videos due to my brain fog!
But even more, what has been eye-opening is how my illnesses have affected my outlook.
There are some positives: I have more gratitude for the simple things, and I know each day is a gift. Being able to be productive is not something I take for granted, which makes me appreciate the productive days all the more. Yet there are so many negatives. I’ve discovered I have a bent towards self-sabotage and tremendous insecurities about my ongoing symptoms.
Every time they tell us to imagine ourselves where we want to be, I have a hard time thinking about it. I just assume I’ll never get there. I assume I’ll never be well enough to succeed at the level I would like. I have a hard time not imagining myself still sick and working in my parents’ basement in ten years. If I do try to imagine myself where I want to be, first I envision myself able to run again… And then I quickly squash that image so I won’t end up disappointed.
I think the reason I’m stuck in the mindset of being sick for the rest of my life is to protect myself. If I indeed am not better, or at least get my symptoms more manageable, in ten years, then I can’t feel as bad about it if I never imagined myself well by then—it will just be as I expected. I don’t always take the leaps of faith I could because I’m afraid I’ll get sick and have my illness ruin an opportunity—it’s happened several times already. Indeed, the balance between being realistic about your limitations and daring to reach for your dreams is a delicate one.
There’s a part of me that’s sure it was a big mistake for me to attempt the program. I tell myself this will be just like all of the classes I had to drop in college. I took at least a half dozen Incomplete’s over the years because I overestimated what I could do. I tell myself this course will be just like the internships and jobs I didn’t get or lost due to being sick. Or it will be just like the graduate school program I had to leave altogether. What audacity I have to imagine this time will be any different!
Moreover, the program suggests we establish a healthy morning routine that includes movement. The video said it could be something light like going for a fifteen-minute walk. Ha! I’ll be overjoyed when I can do three minutes of continuous walking without a crash. And besides, lately, I don’t even have mornings because of how late I sleep—I’d long given up on keeping normal hours before this program. Again, the feelings of inadequacy.
My insecurity is so deep that I don’t engage with other participants.
Everyone raves about the online discussion group, but I haven’t even introduced myself or liked a single post. I just feel like the sick person that no one will understand. How can I possibly explain that every moment of every day is dictated by an illness that leaves me at 20% capacity most of the time? How can I explain I’m still not sure this wasn’t too much to take on? How do I explain that I have entire weeks when I’m not able to sit at my desk and be productive?
Obviously, none of those are topics anyone would bring up when they introduce themselves. However, they’re my reality, and I fear it makes me too different to be relatable. And I’m concerned at least one of those things will become unavoidable to disclose to someone eventually, and then people might not want to connect with me. I don’t want to scare people off, which has very occasionally happened before when I told the full truth. But most of the time people have been supportive, so why am I like this?
My insecurity about being sick used to be so much worse. When I was really bad off with PANS, I would hide in my dorm almost all the time when I had a choice. I knew I wasn’t fully myself, and I didn’t want people to see me as this other person that the illness had made me. I never went to social events. I didn’t want anyone to ask about my tics. I didn’t want people to see my puffy Prednisone face.
I once had such a powerful sense of shame that belied the fact that none of it was ever my fault—nor was it actually anything to be ashamed about. It was this sense that I had been forced to wear a humiliating costume, PANS, so of course I wouldn’t want anyone to look at me too closely. I suspect it could take years before my brain completely realizes I’m not in that costume anymore.
And then there’s the underlying sense of fatalism.
If I’m honest, it’s been there for years. Yes, I’ve continued to accomplish a surprising amount, but in the back of my mind, there’s a thought that says: What’s the point? You’re always going to be sick and never live up to your potential.
Sometimes I just don’t try because I’m sure something bad will happen to me to make it all pointless. I’ve been beaten down by illnesses so many times that it’s hard to imagine a time when I ever go more than a year or two without my life completely falling apart. Since at least 2012, the longest I’ve ever gone without a major crisis is just under two years. How can anyone build a life with this past looming over them?
Nevertheless, I think this program is one of the best things I’ve done for myself in a long time. I think it’s a good thing to take my mind off my illnesses. I think forcing myself to think about my future in a positive light will prove highly therapeutic. Maybe I can’t do as much as I’d like right now, and maybe I have to do a lot of things differently, but that doesn’t mean I can’t find my own ways.
And besides, isn’t the entire point of professional and personal development programs to grow and learn? And I’m certainly learning the full extent of my self-defeating mindset. Fortunately, this means I can begin to take steps to change and reframe my thinking. The fact I even invested in something like this program says a lot about my dedication to overcome the self-sabotage.
I have a feeling it will take longer than a few weeks to rewire my brain to stop going down the road of fatalism and self-sabotage. In fact, it may be an ongoing challenge due to the nature of having a long-term illness. But I’m to the point where I know this is a battle worth fighting—and one I’m more and more sure I’ll win someday.