“You need to go back,” my doctor warned me one day this summer.
I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”
“You need the support… You’re getting worse and worse.”
I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”
Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go”
“Just go to the lab,” the doctor says, handing me a long list of tests.
“I have a port,” I remind her. “You’ll have to send this to the infusion center since my veins are too scarred.”
She paused, mulling it over for a second. “Well, the lab is where you get blood drawn, so I’m sure someone there will help you.”
“But phlebotomists can’t access a port.”
“They’ll find someone,” she ushers me out of the office, leaving me to hang out and dry and ignoring farther warnings about what will happen to me if I go to the outpatient lab…
Continue reading “The Problem with Having an Anxiety Disorder AND Another Chronic Illness”
This Thanksgiving week, at a time when almost everyone is stressing out over travel and preparations and relatives, for those of us with chronic illnesses, the season brings additional sets of challenges.
Chances are, if you don’t have a chronic illness yourself, then one of your family members that you’re about to see does. It can feel awkward wondering what you should and shouldn’t say to this person, but as someone with both physical and mental health challenges, I’ve assembled a few tips for loved ones.
Continue reading “8 Ways to Help a Loved One with Chronic Illness During Holidays”
This week, I’m honored to have my first guest blogger ever, Mary McManus, MSW, the mother of 32 year-old Ruth Anne who has PANS. This story is an important one for raising awareness of PANS in adults because so many others, like Ruth Anne, have spent years pursuing psychiatric interventions to little avail, unaware they have a treatable medical condition…
The Missing Piece of the Puzzle
Mary McManus, MSW
What is more challenging than watching your adult daughter’s life fall apart before your very eyes? It was having been a social worker for 25 years and not being able to help her using “traditional methods” of intervention.
Continue reading “Guest Blog: The Missing Piece of the Puzzle”
It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:
“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.
“What’d you say, mom?”
“I didn’t say anything.”
I paused for a moment. “Did you say something, dad?”
He shook his head.
“So neither of you heard it?”
A chill ran down my spine as I suddenly realized what just happened: Continue reading “Why I Don’t Care What You Call Whatever’s Wrong with My Brain”
With all of the new followers joining my blog and social media accounts, I’m going to take this post to welcome you, say thank you, and talk about what’s next…
This month, over 4200 of you read my stories, and as the shy person that I am in “real life,” this is unfathomable. Those who read my extreme OCD story from the other week now know a part of my life that none of my “real-life” friends know—at least, not in such detail.
But what this means is that awareness about Pure-O/Scrupulosity OCD and PANS/PANDAS in adults is spreading, and even my bashful self is incredibly grateful to be a part of that—so, truly, thank you for sharing my posts.
Continue reading “Welcome, and Thank You!”
For six years, I kept a secret that I was determined to take to my grave. I pretended I wasn’t constantly afraid. I made excuses when asked about my unusual behaviors. I was so hell-bent on avoiding being found out that I did everything I could to fool every psychologist, therapist, and doctor I encountered.
And the whole disaster started with one thought.
When I was eleven, while lying in bed, something along the lines of “F– G*d” popped into my brain. As the good-girl church acolyte that I was, I felt horrified. What did it mean that a sacrilegious thought like that could appear in my mind? I felt like I had to do everything I could to keep it from coming back or else that meant I was a bad person. I already felt incredibly guilty that it had happened even one time.
But as the days went on, the more I tried to resist thinking that thought again, the more often it happened and the more it evolved and mutated into increasingly offensive thoughts until they had some of the most explicit, blasphemous, sexual, and violent content imaginable. Everything I didn’t want to think, I ended up thinking. I fell into complete and utter despair. Continue reading “The Kind of OCD We Need to Talk About”
After twenty years in and out of group homes, psychiatric hospitals, and residential treatment centers, at twenty-nine, Jo* has never been stable enough to have a job. Jo lives with his parents between hospitalizations. Despite being incredibly smart, Jo barely finished high school due to several learning disabilities. Jo’s frequent panic attacks render him unable to drive. Jo almost died of cardiac arrest from anorexia and has attempted suicide multiple times. Continue reading “Why Ignoring Adults with PANS Hurts Everybody”
[Trigger warning: this post contains discussions of personal experiences with suicidal thoughts and misconceptions. If you’re in an emergency, please call the National Suicide Lifeline at 800-273-8255 or dial 911.]
No one needs to know, I told myself as I sat frozen, staring at my phone. I don’t need to call him, I tried to convince myself. I remembered how I promised I would if the thoughts came back, yet as soon as I pulled up my doctor’s number, I set my phone back down and started talking myself out of the call once more. Continue reading “Why These Myths About Suicide Are So Harmful”
Why would this happen? How could I get worse while getting treatment?
Years ago when I started this blog, every time I had a symptom flare-up, I’d ask myself these questions over and over again sure that if I thought about them hard enough it would all make sense.
Unfortunately, when you have an illness which science has only recently begun to understand, you rarely get the satisfaction of knowing why you’ve gotten sick and what exactly will work to get you better. Sure, well-established, proven guidelines for diagnosing and treating PANS exist (though they didn’t when I started), but all too often, I relapsed without knowing why and had no objective test to prove how sick I was; I’d lose my entire personality, but the autoimmune markers you might expect in someone suffering from brain inflammation never showed up.
Continue reading “Could This Antibody Be Stealing My Life?”