My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds.

even when I’m doing well, I can’t let down my guard…

There’s no single cure for my conditions, PANS and Lyme Disease, that guarantee they won’t eventually come back. Yes, there are treatments that put them into remission, and most people who get the right ones for their particular case eventually get better and go on to live their lives. However, no one can ever promise that either disease won’t return at some point in the future.

I can’t know that PANS won’t come back and make me lose my mind this year, this month, or even this week. The “A” in PANS isn’t “Acute-onset” for no reason: everything can change in an hour or two.

PANS is an autoimmune disease that attacks the brain, creating all manner of miserable neurological and psychiatric symptoms.  It’s triggered by bacteria and viruses, and sometimes all it takes is a brief exposure.

Therefore, my life is defined by precariousness, literally one infection away from insanity at all times.

For all I know, I’ll cross paths with Strep or flu while out running errands today, and then it’ll re-trigger PANS into attacking my brain all over again. For all I know, maybe that flare-up wouldn’t respond to any of the treatments I’ve done before, like antibiotics or steroids—it could be a relapse so strong that I’d have to move straight to plasmapheresis or Rituxan and then spend months healing my brain.

Of course, the vast majority of the time that I’m around someone who’s sick, or if I catch a cold, it just means I start having more involuntary movements/tics and my depression returns.  Usually, I can take anti-inflammatories, wait it out a few days, and then go on as if nothing happened.  But what if the next time is different?  And what if I catch something more serious, like the flu?

With this year’s flu being particularly virulent, I feel like I’m tiptoeing through a minefield whenever I’m in public. I’m always waiting for the other shoe to drop, anticipating the next time an illness will come out of nowhere to trick my immune system into attacking my brain.

Me trying to avoid getting sick during flu season!

The truth is that I don’t fear the unknown: I fear the known torture that will ensue the next time my brain becomes inflamed: the bone-crushing, gut-wrenching terror and despair that don’t respond to medication or therapy. I fear the loss of my entire personality and everything that makes me myself, as my illness has the most horrible way of stealing.  I fear the pain of an autoimmune disease that doctors continually mislabel as “psychiatric” and refuse to treat—for which I have to go through the back doors of the medical system to get appropriate care.

These days, I’m doing okay, neither in crisis nor completely well. Indeed, I’ve spent most of my years of PANS in a state like this. However, times like now can be the most difficult to cope with, because I feel like I’m walking at the edge of a precipice; I’m acutely aware that if the right trigger came along, I’d easily be pushed off the cliff. In better times, it’s easier to forget that there’s a precipice at all, because I’m much farther from the ledge in the first place.  And in the worst times, my brain is so impaired that I’m literally incapable of processing the full horror of my disease.

This week, my therapist asked how I deal with the uncertainty of PANS and Lyme. How can I cope with the knowledge that I could lose my mind any day, and then have my life completely derailed for months?

I had to ponder it for a while, until it occurred to me that my coping strategy is, 99% of the time, I simply don’t think about what might happen if I had a flare or relapse…

For me, it comes down to living in each moment.

No one knows what will happen to them tomorrow. I share my uncertainty with every other human being on the planet—it’s just that I’m more cognizant than most about how precarious and fragile all of our lives really are.

For this reason, I’ve kept living as much as I could for the last eleven years. I don’t know when I’ll get better, and I don’t know when I’ll relapse. What I do know is that I have one life and one “now,” and I’d rather not waste it thinking about what may or may not happen.

Of course, it’s easier said than done sometimes. I do worry about whether I’ll ever be able to hold a job, find a partner, or even just live a more “normal” life, free from constant treatments and medications and appointments. Sometimes, I’m afraid to have any dreams, because I fear I’ll get sick again and have them taken from me right as I start getting successful.

Nevertheless, I keep moving forward, despite my uncertainty and anxiety.

Over the last few weeks, I’ve been applying to graduate schools. I don’t know if I’ll be well enough to go come September, or even if I’ll want to. I don’t know where I’ll study, or exactly what I’ll do when I’m done.

But what if not knowing is part of life’s adventure?

After eleven years of chronic illness, I’ve realized that uncertainty is a teacher, helping me see that it’s okay to not have all the answers. Uncertainty has taught me that all any of us can do is to embrace each moment, taking life however it comes.

Yes, my disease means I live on a precipice, but I can either cower in fear or dance through the journey—either way, I’m stuck on the ledge for the time being. And so, I’ve decided to keep my grad school and career options open and keep dancing through life anyway.

18 thoughts on “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

  1. …However, getting back to the emotion thing, I really have suffered a lot of emotional pain due to all the setbacks I’ve had, so even when biochemically my brain is OK, I’m still not where I want to be. Like the disappointment about the lack of groups I mentioned above–the fact that there are so few opportunities for young adults like us to build connection is a real problem. The fact that most people my age have considerably more relationship experience and are looking to socialize in a very different way while I’m still a teen in so many ways–that’s again a real problem. The fact that I’ve missed research opportunities that I can’t get back now–another real problem.

    So yeah, telling where the real disappointments end and the negativity coming from the organic effect of PANS on emotion processing begins is so hard to discern.

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  2. For me, one of the hardest parts is having to think about how much of any emotion I’m feeling is actually justified given the situation and how much is an exaggeration due to PANS.

    I’ve had depression and irritability so long that in some sense they became normal, and it was completely the world’s fault that I was unhappier and less satisfied with life than my peers. I don’t know how many opportunities, friendships, etc. I have ruined by lashing out in frustration when without PANS I could have just let something go.

    Being also on the autism spectrum delays social development anyway, so it’s not like I have the social skills to compensate or to pick up the pieces when I’m out of a flare. And with the strain of illness on every relationship, I never have the opportunity to grow in my interpersonal skills, which I desperately need. I’ve become better at the pragmatics– having conversations, recognizing when people are bored, etc.–but not on how to share feelings and build closeness.

    It’s made even harder by the fact that there seem to be no really “personal” social or even support groups for college-aged people with chronic illness. Facebook seems like it’s turned into a total wasteland for people like us (even though college students were the only ones on there at the beginning!), overrun by parents and other established adults, yet it’s the only place with actual groups. The blogosphere is suited to speaking anonymously about personal things but not to genuine human connection. And whenever I try to start a “meatspace” group, the interest I get is SO tepid I ask myself why I’m even doing it.

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    1. I relate to this so much: not knowing where to draw the line between the organic effect of PANS and the emotional fallout from having to deal with the effects of PANS for so many years. How can anyone begin to figure out what’s “normal” or “healthy” anymore when what we deal with has been our normal for so long?

      Personally, I feel like we adults with PANS are traditionally brushed under the rug and ignored. That’s why I’ve kept up this blog: to show that we actually do exist and need support like anyone else with this disease! I can’t even begin to count the number of times I’ve read an article describing PANS as a “kid’s disease.” Even if it starts when someone is a kid in most cases, a lot of us go undiagnosed until we’re adults, and it’s time for this to be acknowledged. I think it would be cool if one of the PANS conferences that’s geared towards parents allowed a space just for adults (and even teens) who have PANS, so that all of us could connect with each other. It’s very lonely being a young adult with a chronic illness, especially a chronic illness that most people have never heard of.

      I’m not on the spectrum, but I’ve had a hard enough time relating to people my own age because of PANS and Lyme. I feel like I’m very young in a lot of ways since I missed certain social milestones that many others my age have had, but I also feel much older because my illnesses forced me to grow up too quickly in other ways. That’s why it’s helpful for people with chronic illnesses to connect… I wonder if the lack of interest in the groups you’ve tried to start could have to do with how little energy some people with chronic illnesses have? I know there have been a lot of times when I would’ve loved to spend time with friends or go out, but I either didn’t have the mental or physical energy to do anything. I’m sure there are others out there who would like a group like the ones you’ve tried to start.

      Life as an adult with PANS is so much more complicated than a lot of parents and professionals like to admit (and I’d imagine even more so if you’re on the spectrum as well). I do like to hope there will be a time when PANS gets diagnosed often enough that we can all find others locally, but until then, perhaps my blog is the closest thing I can get.

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      1. The problem I see with blogs is that people pour their souls out very publicly to the whole world, but usually anonymously. I’d prefer the reverse–a place where people could be open about who they are, share pictures, and whatever, but where discussion of personal details would be one-on-one or in a small group. Something like a closed Facebook groups. Then even if you didn’t live close together, at least you could video chat and it would be a bit like a friendship. Blogs feel too wide open to the public to really replace a friendship.

        As I said, the problem is the only sites that have groups (Facebook and Meetup) are also the ones that have a severe shortage of students to begin with. Snapchat, Tumblr, Instagram–none of those have virtual groups.

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        1. Yes, you make some very good points, and I agree. I don’t talk about 99% of what I post on here with anyone in “real life.” I don’t feel like anyone without a chronic illness (or anyone who at least has had a close relative/friend who has one) would understand–or more importantly, that anyone even wants to. Nearly every time I’ve tried to open up to someone, they run away and stop talking to me because they can’t “handle” interacting with someone who has a serious illness. Other people treat me as if I’m nothing more than “the sick girl” when I tell them about what I deal with. Neither of these is a good way to have a friendship, so I find pouring everything out online (while sparing certain identifying details about me) is my only way to connect with people who understand, care, and treat me with dignity. Essentially, I live a double life, and no one sees the entire picture of who I am.

          But all of this is exactly why there needs to be a place where people like us who have chronic illnesses can open up to each other offline and form genuine connections. I have made some friends from my blog that I feel know me better than anyone in “real life,” but I also know hiding behind “The Dreaming Panda” as a nameless, faceless writer is no replacement for face-to-face relationships.

          Have you ever started a Facebook group for young adults with chronic illnesses?

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  3. Great post! As you say, each and every one of us lives with uncertainty, but you are more acutely aware of it than most. Thanks for sharing all your valuable lessons and I hope you keep dancing through your journey!

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  4. It’s so amazing how you so eloquently put into words what we live through and think, but can’t articulate it like you!
    Keep going & living. Fully understand about waiting for the other proverbial shoe to drop!

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  5. This reflects my thoughts exactly. I don’t have PANDAS, so I can’t say I relate completely to that part. I can’t imagine how difficult that would be! While not the same, it makes me think of brain fog and the moments of complete and utter confusion I’ve had- forgetting what year it is, being convinced it’s February when it’s January, wandering around aimlessly…. I can’t imagine it getting worse, and I know that it can. It truly is all we can do to walk it out one day at a time. Being thankful for the clear moments, especially. It’s easy to live in constant fear and so much harder to be at peace with whatever the future holds. So many good points. Got me thinking.

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    1. I have walked this journey with my daughter and son in law and her family so I am pretty familiar with this disease, as much as one can be with the crazy changing faces of this disorder, but what do you think the main differences are between PANS AND PANDAS, other than PANDAS is triggered by strep and PANS can be trigger d by anything. Also, not convinced that he doesn’t have PANS. Also, don’t some believe that PAND starts out as a response to strep in the beginning? Just thinking out loud here.

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      1. Yes, some do believe that PANS starts out with Strep. I’m not a doctor, but from what I’ve heard and read, they’re essentially the same disease, and the only difference is that PANDAS is caused specifically by Strep, and PANS can be caused by any infection or even environmental triggers like mold or stress–basically anything that activates the immune system could set PANS into motion for someone who has the genes. Technically, PANDAS is a subset of PANS, so someone is diagnosed with “PANDAS” as opposed to just “PANS” only when Strep can be confirmed as the trigger. Both disorders affect the Basal Ganglia in the brain, and from my understanding, they involve the same auto-antibodies. I think PANDAS is supposed to be almost exclusively affecting kids before puberty, since 98% of the population becomes immune to Strep by the time they’re 12. Of course, there’s always that 2%, so PANDAS can and does happen to people who are older, too, though this is rarely discussed. On the other hand, PANS diagnostic guidelines have no age requirement at all.

        There’s also more emphasis on tics/motor abnormalities with PANDAS, whereas eating disorders are talked about more often in relation to PANS. I’m not an expert, so it may be that Strep tends to lead to tics more often than other infectious triggers do. However, I’ve heard a lot of the distinction about different symptoms for PANS versus PANDAS is political, because some Tourette “expert” with a vested interest in pharmaceuticals didn’t want sudden-onset tics to be in the main criteria for PANS.

        It’s all much too confusing. I and many PANS/PANDAS doctors wish the condition would simply be called what it is: post-infectious autoimmune encephalopathy, or perhaps autoimmune encephalitis.

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  6. By the way, Johnny wants to start a blog similar to yours to reach out to other kids going through this. So they know they are “not alone” and to validate their feelings. I think it is a fantastic forum and can really help in healing – continue to do what you do – it does really help!

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    1. Wonderful! We need more people with PANS writing about their experiences. There are so many of us dealing with it, but it sure feels lonely so much of the time. Let me know if he starts one, and I’d be happy to link to it on my Resources page. I hope he is doing better!

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  7. I get so much out of your posts! My 8 year old grandson has PANDAS. He was diagnosed at age 6. Thank you for being transparent and vulnerable in giving words to this disease that my grandson cannot give.

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