For the last eleven years of being sick, time has been my enemy.
The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing. Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.
These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.
My conditions themselves, PANS/PANDAS and Lyme, affect brain chemistry in a way that creates an all-consuming despair too dark for words.
And if the hopelessness weren’t bad enough as a symptom… Doctors give up on you. Family members don’t believe you. Friends stop talking to you. Even the experts aren’t completely sure how to help.
Moving through life with a chronic illness isn’t easy, but I’ve developed strategies that I hope can help any of you feeling hopeless right now…
NOTE: If you’re feeling suicidal, please call your doctor, as this can be a sign of brain inflammation in PANS or Lyme. If you’re in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255.
1) I keep living as much as I can.
Keeping my life as consistent as possible always helps when my disease uproots my mind in a flare. That’s why I stayed in school even when I was horribly ill—even if all I could do was show up to class without understanding a single word. If my illness was going to make me miserable no matter what, I figured I might as well be miserable but working towards my dreams.
However, it’s a fine line between pushing yourself to do too much and trying to maintain a sense of normalcy. The line is different for everyone.
2) I focus on what I can do—not on what I can’t.
My diseases can be incapacitating. Even in my better times, I have to do things slower or in a different way than everyone else. Nevertheless, instead of focusing on my disadvantages, I focus on everything I’ve done despite my difficulties.
I can’t have a job or live on my own right now, but I think I run a pretty cool blog. 🙂 And hey, I did graduate from college in December, so that counts for something…
You’re up against serious challenges if you have a chronic illness. Try not to beat yourself up for what you can’t accomplish at the moment—getting better and walking this journey is some of the hardest work anyone could do.
3) I think about how fortunate I am.
As difficult as life can be, I try to remember that so many people with my conditions never get a diagnosis—let alone proper treatment. When I start feeling sorry for myself, I think about how much worse I would’ve been without any treatment.
Therefore, I try to view my life as a second chance that so many others with my condition don’t get. And I think about making the most of it…
4) I give back.
I never intended to be writing this blog after four years, but I’ve continued because it gives me a sense of purpose when people say I’ve helped them. By giving back to others, I find meaning in my life even when I’m otherwise miserable.
You don’t have to start a blog about your illness, but you can feel better by finding even a small way to make someone else’s day just a little better. You can send your grandma a card. You can pick up a piece of litter in the park. You can text a meme to another friend who’s having a bad day. Shoot, you’ll feel better if you pet your cat and hear her purr with contentment.
5) I distract myself.
Laughter is the best distraction of all, but do anything safe that will take your mind off the hopelessness. There are less options when you have severe cognitive problems and severe physical symptoms that leave you housebound, but there’s always something…
If I can’t read a book or watch a movie or talk to a friend, to be honest, I usually spend all day on Twitter accounts and mindless iPhone games. (Ironically, my favorite iPhone game for these circumstances is called Panda Pop.) It’s easy to get lost in these activities, and when my symptoms are at their worst, the best thing is to make the hours go by faster.
6) I get out of the house.
Some people with PANS are terrified of leaving their home, but when I’m able, I feel better if I take a walk around the neighborhood. Sometimes I start associating being indoors with my hopeless thinking, so going on a walk or just sitting on the porch forces me to think of something else. Unless you have allergies, I believe the fresh air does anyone some good.
7) I spend time with others.
I feel less hopeless when I’m with a friend—especially if they can make me laugh. Humor is so important! Last semester, I told a few good friends about my relapse, and they’d sit with me through flares or encourage me to at least have lunch in the student union instead of alone at home. You’d be surprised how kind some people can be if you let them into your life just a little bit.
8) I find an outlet.
When possible, I redirect my energy to a hobby. Until I got too sick a few months ago, running was my go-to. I ran three times a week, and the races I trained for were often the only thing I looked forward to. It gave me another reason to not give up.
But for you, your outlet could be art. Or maybe baking makes you feel better. Maybe it’s playing an instrument. Maybe you love to code. Maybe writing is enjoyable. Or perhaps you get really excited about Bingo. It doesn’t really matter what the activity is, but it’s helpful to have something simple that lifts your spirits.
9) I try to think rationally.
Unfortunately, PANS and Lyme are notorious for crippling one’s ability to think clearly. However, I learned to accept that this was so and to look at unusual thoughts with suspicion. For example, I now know I get suicidal thoughts when my brain is inflamed, and I know they’re just a sign that I need more antibiotics or steroids—the thoughts aren’t based in reality.
When I start going down that rabbit hole of extreme despair, I’m now able to step back and realize it’s just a feeling—life isn’t as hopeless and pointless as my brain tells me it is. Like the saying goes: “Don’t believe everything you think.”
I credit this skill to Cognitive Behavioral Therapy, which I highly suggest to anyone willing to try it. And again, please reach out for help if you’re feeling suicidal or thinking of hurting yourself. There’s always hope.
10) I think about how far science is progressing.
We’re only at the very beginning of understanding many chronic diseases. Although it’s frustrating for those of us suffering right now, I find hope knowing how much research is happening. I truly believe that in my lifetime, PANS/autoimmune encephalitis and Lyme will become mainstream conditions that doctors know how to fix. To me, it’s only a matter of time until we all get better.
We just have to hang on until then.
So to all of you readers wondering how you’ll get through another day, I hope you’ll find something in this post that will help you keep going. Know that you’re not the only one going through this. I promise it’s not hopeless, no matter how sure you are that it is. ❤
These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.
I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy.Continue reading “Why I’m Doing Better Than I Think”→
When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.
When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality.
To be honest, I’m vexed that I never seem to adequately describe what it’s like down in the abyss of PANS and Lyme, because it can’t be understood by talking about my symptoms. I want everyone to know that what happens on the inside—not only the visible symptoms—is what ultimately defines recovery for many of us.
What Happens in My Mind During a Flare?
You see, when I have a PANS relapse, as I did starting in August, it’s like someone kidnaps me from my own body. It’s as if they take out everything that makes me myself and leave behind a shell that only looks like me on the outside.
When I’m in a flare, there’s a wall separating me from everyone, as if I walk around in a semi-opaque plastic box that mutes and dims everything I try to perceive.
I’m both a puppet and a spectator of my life, mechanically going through my activities as normally as I can while not being a part of them anymore. My days mean showing up invisible and ignored at my own birthday party while watching everyone celebrate without me.
In those times, my thoughts and reasoning make sense to me, but when I have to interact with the external world, everything is confusing. No one understands what I’m trying to tell them, because I can’t find the right words to crystallize the ideas in my head when I speak. I feel like I’m on a whole other planet from everyone else, and the loneliness and lack of communication is devastating.
Sometimes, I see the ceiling and the floors dancing around, and I know I’m hallucinating, so then I wonder: what else am I seeing and feeling and experiencing that isn’t based in reality? One of the hardest parts of my flares is the sensation that I’m losing my mind while being lucid enough to realize I can’t know how far gone I am—and wondering how much farther I’ll fall.
Yet as awful as the detachment from life and reality is, the worst part is by far the psychiatric torture that results when the brain is inflamed. To have a PANS/PANDAS flare is to be forced to drink the most bitter elixir of despair, rage, and panic stirred together into a brain-crushing poison…
It makes you scream and run and pull at your hair because you’re trapped inside a mind that terrifies you—and there’s no way out. You’re afraid because you feel like a menacing outside force is in control of your body. Your thoughts are turned against you, taunting with hopeless lies and instilling irrational fears and obsessions that consume every moment. It’s so unbearable that you’re not sure how you’ll survive another minute, and you hope the PANS potion will kill you.
So much of what I experience and feel during a flare cannot be quantified objectively or understood by what everyone sees on the outside. People do tell me I look less tormented or more like myself when I get better, but they have no way of knowing the magnitude of the transformation—or the profoundness of suffering from which I’m emerging.
You can’t measure one’s sense of “self” with any blood work or symptom scale—especially if you’re asking a person whose brain and ability to process information has been compromised. By definition, I can’t accurately evaluate how ill I am while still ill. But when I’m better and back to myself, then I know.
And right now, I know.
In October, I began to come back to life after high-dose IV steroids. As I got better, I came to realize more and more how much of my personality had been stolen by this disease. My depression and anxiety were the first to subside, only hours after my first treatment, but some part of me knew I still wasn’t “right”—though I couldn’t quite identify what was wrong with me.
There was more to recovery than not having symptoms…
I hadn’t been able to socialize or do school or enjoy my hobbies, so when those things became not only possible, but natural after two more treatments, that’s when I felt I was truly healing—not just when my depression, anxiety, tics, and cognitive problems began to disappear.
Recovery wasn’t only about having fewer symptoms—it was about having more of my personality and the ability to enjoy and live my life.
Today, three months later, I feel great, but most people would say I’m nowhere near recovered: I’ve recently developed a “neurological limp” where my left foot drags behind me, and both legs give out every few steps when I walk. And I’ve started having complex vocal tics where I involuntarily utter strange (though usually hilarious) phrases against my will.
Obviously, I’m still hoping my Lyme/Bartonella treatment will knock out these remaining problems, but trust me: I’m doing far better than my symptoms might suggest.
These days, I’m enjoying being alive, I’m seeing friends, doing grad school applications, and writing my book (plus intensive outpatient therapy for my eating disorder, but that’s a whole other story).
I might seem bad on the outside, but I feel connected to reality and like I’m part of the world around me—things that were unattainable just a few months ago. I know better than anyone else how frustrating my lack of motor control is, but I also know it pails in comparison to what I experienced in the depths of PANS.
I’ve said it many times before, and I’ll say it again: recovery is never linear. There are all sorts of ups and downs and twists and turns. I could get discouraged that I continue having serious symptoms, or I can realize that having my personality back is the biggest and best leap forward that I could’ve asked for in my recovery.
It’s not about the symptoms for me. It’s about coming alive again.