“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…
I can feel my heart start to pound in both anger and anxiety. There was a reason I had surgery to get this device put in! It’s there because I need it—not because I had some weird desire to get a silicone tube threaded into my heart. It was to the point a nurse was lucky to fill a quarter of a vial of blood, if she was even lucky enough to get into a vein at all.
So I sit out in the hallway making phone calls to labs and infusion centers myself where no one will listen or let me use my port. “We can usually get blood from a hand,” the lab phlebotomist on the other end says, imagining this is a helpful comment. But it’s too late.
The room starts to spin, and I’m gone in a panic attack.
If anxiety were taken as seriously as so-called physical illnesses, no doctor would consider it acceptable to needlessly cause me a severe flare-up. No one would ignore my cautions about this inevitable consequence of peripheral blood draws. No doctor would say they consider it ethical to cause unnecessary physical pain, so why is it okay to make me bawl with anxiety without so much as an explanation and apology that this is how it has to be? Worst of all, this was not an isolated, one-time occurrence, but it’s a recurring theme.
After hundreds of blood draws and IV’s, somehow needles in my arms have become my kryptonite. I know it’s irrational. I know I need to work through this in therapy. However, I can’t simply decide to stop being traumatized. It’s never about the pain of a single needle—it’s how the act triggers upsetting memories and all of the emotions I experienced during the times I was at my sickest and needed frequent blood draws. It sends me back into the headspace of having a brain on fire and not knowing if I even had a future.
As someone with a chronic illness who has endured many unpleasant physical and mental symptoms, I can truly know that anxiety is one of the more challenging and strange ones because it can take so many different forms.
Anxiety can happen on a visceral level so insidious that you don’t even know it’s there. It can be a racing heart. It can be stomachaches. It can be shaky hands and weak knees. It can be a feeling that you’re not in your body. It can be all of your limbs going numb. It can be an impending sense of doom. It can be going over and over things that might go wrong instead of just taking it all one step at a time. Anxiety can even look like procrastination because you’re afraid that what you do won’t be perfect. It can sneak into your life without you knowing until it’s taken all control.
In the last few weeks, anxiety has done exactly that.
I was having a low-anxiety streak for many months, but once I caught a cold, it set off the brain inflammation I get with PANS, and anxiety reared its ugly head all over again as a symptom. The worst of the flare cleared on its own within a week (remarkable given how it used to take IV steroids to pull me out of one). However, increased anxiety went on for over a month: usually mild enough that it didn’t impede my ability to function, but bad enough that I often felt mentally uncomfortable and lost some sleep. And just the fact that I had a mini-flare at all can be triggering in itself, adding psychological anxiety on top of the inflammatory component if I allow myself to get into a thought spiral over how scary PANS can get.
Last week, I put my head down on the pillow one night and realized with great satisfaction that I’d finally had an anxiety-free day… Or had I? The constant sense of doom was gone, but no sooner had I thought about not having any anxiety that I began worrying about everything bad that might happen to me—and let out a laugh that I could forget that this, too, was a form of anxiety!
Lately, I’m so used to my anxiety that I forget how it can shape-shift every day. I’m used to ruminating and not sleeping, and I’m accustomed to the pit in the stomach I get while thinking about troubling things that might occur. Anxiety is such a part of so many days of my life that it would feel strange if someone ever completely took it away for good.
If you ask me about it, I’ll usually tell you anxiety doesn’t effect me too much, but once in a while, it’ll let out a roar reminding me never to forget its home within my mind.
I may manage the background anxiety, the psychiatric equivalent of the constant ringing in my ears and the floaters in my eyes that I try to forget about. Unfortunately, it doesn’t take much to bring my anxiety to the foreground and over the edge.
It can go from zero to sixty within seconds given the right trigger.
I’m told some of it is a form of brain damage because the fight-or-flight center (Basal Ganglia) of my brain was inflamed for so many years. Thus, there are well-worn neural pathways that I can easily fall back into even in times where there isn’t active inflammation.
I consider myself fortunate to no longer have unprovoked panic attacks that come out of nowhere, but now, something that might give anyone a little bit of anxiety will send me into a sobbing, ugly-cry, terrified meltdown that no one can reason with or control. I’m never completely sure when it will happen, but I’m on high-alert any time a doctor or needle or authority figure is involved…
I had a terrible time at grad school whenever I had to meet with my advisor to show my progress, because I was sure they would hate everything I’d done and not think it was good enough. By the end of the semester, I’d start shaking every time I sat down to work. But then my fear became a self-fulfilling prophecy because it made me too anxious to be productive. So it just got worse and worse and worse every week I showed up with barely any work done.
Let’s just say that I’m not surprised all if the anxiety adrenaline caught up to me and contributed to my big ME relapse this summer.
I’m no longer in grad school, however, so my anxiety mainly shows up when I’m trying to get medical care. And unfortunately, I’m seeing doctors multiple times per month to get to the bottom of what’s been going on with my body, so there are ample opportunities to have panic attacks. I think anyone, even if they didn’t have an anxiety disorder, would feel nervous about certain procedures I’ve had done, but I manage to take it to a whole new level. And it’s curious that things like blood draws that used to never throw me at all now trigger a total sobbing meltdown…
I panicked so badly before I had a spinal tap that I had to get sedation. I panicked when a tech put me into an MRI machine, despite never being claustrophobic before. I panicked when a nurse claimed I had to get a Pap smear when I was only there to discuss medication. I panicked when I woke up from minor surgery to the point they had to give me an oxygen mask. I panicked when an infusion nurse refused to access my port—which led me to put off a major intervention I allegedly needed.
I didn’t used to get so upset about nearly every medical procedure.
The longer I’ve been sick, the harder everything has become.
The truth is that my anxiety affects my health and my ability to get help for it tremendously, but the saddest thing is that stigma makes me too afraid to disclose this. Right now, thankfully, I have some gems of doctors who listen to my concerns and don’t downplay how scared I am or expect me to snap out of it—as much as I would very much like to do so!
However, a lot of doctors in the past have either attributed all of my problems to anxiety or trivialized what it’s really like to live with this mental illness. When I say, “I have anxiety,” I try to convey that it’s not just typical nervousness, and yet somehow it’s either dismissed or blamed for too much.
If doctors know I have anxiety, my physical symptoms can be written off as psychosomatic manifestations of it, and no one will dig for an organic cause. I will then be a hypochondriac worried about symptoms of my mental health condition, and they will send me back to my psychiatrist without a proper diagnosis.
“Your symptoms are just anxiety,” they will say.
Just anxiety—as if it’s not a debilitating condition for some of us on its own. As if psychosomatic symptoms aren’t just as bad as so-called “organic” symptoms. As if anxiety doesn’t warrant proper treatment. As if anxiety is something I can wish my way out of, unlike a “real disease.”
The message is clear: I’m less worthy of medical attention because I have anxiety.
I don’t believe that even the most dismissive doctors I’ve seen have ever had ill intent towards me—though there was definitely at least one who, with her many sighs, thought I was a complete waste of her time. But in most cases, I think doctors expect people to be nervous about procedures, and for most patients, a little reassurance is enough. So the problem, to me, is when they do not listen when I say it’s more than nervousness—and the problem is when my anxiety is taken so seriously that it’s used as an excuse to not help me.
I know I can be a challenging patient sometimes because of my anxiety, but a little empathy and validation go a long way. Listen when I ask to use my port. Listen when I ask about a one-time anti-anxiety med for procedures. Listen when I ask for my mom or dad to sit with me until the very last minute. Most of the time, these things are all it takes to calm me enough to get through whatever needs to happen. But you can be sure that ignoring my concerns and past experiences will absolutely make my anxiety worse.
This week, I’m pretty proud of myself for getting through some important appointments without a panic attack. My anxiety did start to kick up a lot when someone brought up labs, but this time, I managed to ground myself before it progressed. And the doctor listened and let me get the twenty-five vials of blood from my port (a personal record quantity)!
There’s a lot to update you all with regards to my new treatment plan and my now 46,000-word book on conquering college with chronic illness and disability that’s coming along well. I will save most of the update for other posts, but it looks like the treatment focus for my ME/CFS is antimicrobials and bringing down inflammation, probably with low-dose Naltrexone next. This is key, and both infection and inflammation can make my anxiety a hundred times worse if left unchecked. And I’m also hoping neurofeedback, which I’ve never tried, will help, too.
So all in all, I’m seeing a lot of signs of hope that I can calm my anxiety down and maybe even get to a point where medical procedures aren’t synonymous with panic attacks. And finding healthcare professionals who are listening and showing empathy gives me so much hope for my recovery and my ability to do what I need to get there, too.