When anxiety and health conditions collide
Here’s how we cope.
Welcome to Solicited Advice, our weekly column that celebrates the helpfulness in health. Because in a world where strangers at the grocery store love to tell you that a specific brand of magnesium will indeed “cure” what ails you (it probably won’t, so sorry), we’re all about passing on our lived experience in a way that makes your life a little better. Are we experts? Nah, not really. But we’re great listeners who have perfected the art of pillow screaming. Let’s get into it!
I am not new to the “professional” patient life, but I find that my medical anxiety is getting worse over time. Sometimes it even keeps me from scheduling or following through with appointments or procedures. Can you all relate? Any tips?
Ash: I can 100% relate to this feeling, but it’s not all created equal. When I’m at the dentist, I’m shaking profusely in the chair. When I’m at my endocrinologist, it’s a little bit of nerves but manageable to work through. When I’m at the optometrist, anxiety is not even in sight. I think it’s so easy when you’ve had bad experiences or difficult diagnoses that require extra maintenance to slip into that anxious state because you’ve come to expect bad or hard news and the chance for unpleasant to downright awful testing or treatments. Here are a few things I’ve learned about myself to help combat it as much as possible:
Make my next appointment when I’m checking out. Even if it’s a year out, it avoids phone calls and having to actively think about it until the date rolls around.
Bringing my partner or a close friend. It can help having someone to talk to while in the waiting room to help me get out of my own head.
Anxiety medication. While this isn’t doable or practical for all visits, it has become a necessity for dental work, even a cleaning. The biggest con is that this requires you to have a buddy who can drive you. It’s not a big deal if you’re following #2, but it can be limiting to coordinate schedules when you’re already fighting the anxiety of making the appointment in the first place.
Now, do I take my own advice? Not always. In fact, I have several appointments I need to schedule that I’ve been putting off for months (or even years 😅) due to that anxiety. All that being said, you’re not alone and it’s OK to struggle with it!
Jess: Anxiety is kind of my baseline state, and so I tend not to differentiate between medical, social, and day-to-day anxiety. In some ways this is helpful because it means the goal is recognizing the anxiety, developing coping skills that generally work regardless of the cause, and reaching for my tools. In other ways, the lack of differentiation can add to that general clusterfuck of anxiousness and can make it more difficult to address causes.
In our March Checkup last week, I mentioned I started an anti-anxiety medication. That did bring up some very specific anxiety that I was able to pinpoint and dig into with my therapist. On the one hand, I’m always concerned about being believed and making sure I neither undersell nor exaggerate my symptoms. On the other hand, I’m worried about being treated with carelessness. I had a really horrible experience with a different medication from February 2018 through June 2019, and that was in large part due to the prescriber — who didn’t know me — not listening to what I was asking for, and me being so desperate for relief that I didn’t do my usual due diligence (read: anxious reading and questioning).
While sifting through those feelings, I was able to identify that I do very much trust my current primary care provider. She knows her shit, she’s attentive, she believes me, and she allows space for me to self-advocate. Looking at the evidence, I have multiple reasons to trust her and no experiences with her for me not to trust.
The other part of the equation was about what happened with my prior experience. My therapist and I talked at length about the specifics of how things happened, from being prescribed to tapering off of it. And we identified the specific things I wanted to avoid this time. From there, I was able to go into my appointment with my primary care provider and be very clear about what I did and didn’t want. We discussed other meds I’ve tried previously, and how they affected me. Ultimately, we decided to try something I hadn’t tried before, and we scheduled a follow-up visit before I left the office.
Of course this didn’t “cure” my pre-appointment anxiety, but it helped me recognize what was behind it and address the root causes. It also helped me realize I didn’t need to play this situation as close to the vest as I tend to usually. I made sure everyone involved in my day-to-day life was aware of what was going on, what medication I was starting, and what I was keeping an eye out for (and why!).
Was I still anxious going into the appointment? You bet your ass I was. But it was more baseline anxiety than situation-specific because I knew I was as prepared as I could be and I have people in my corner who have my back.
Kat: This state of being is so palpable for me right now because my medical anxiety is tenfold what it used to be — shout-out to what BFF Ash said about anticipating bad news, of which I’ve received lots — and yet there’s this strange dichotomy I experience where I still feel very at home in hospitals and medical settings. Calibrating the two is… tricky. If you haven’t done it already, I highly recommend you sift through what specifically makes you anxious. I’ve found that writing it down over a period of time works great! Ask yourself: Is it a particular office, doctor, or specialty? Is it only for procedures? Does it pop up when you have to go under general anesthesia? Or does it depend on how your mental or physical health is holding up? Are finances or insurance a factor? These days I primarily struggle with invasive tests I haven’t had before (scans are no big deal for me, thankfully, because I get a lot of them), appointments where I know I’m going to have to advocate my butt off to get what I need, and surgery of any kind. Because I know my specific triggers, I can be more proactive with my care. For example, I know that post-op pain management is harder for me than most patients, and because I have so many drug allergies, keeping me in the hospital for at least one day after a surgery — even if it’s “usually” outpatient for other people — is a safe and smart idea. I regularly have adverse reactions to antibiotics and my pain is often not controllable orally, so I always have it in writing that staying one night in the hospital is standard practice so I don’t have to advocate for that when I’m especially groggy.
Another thing that’s been wildly helpful for me is actually letting providers know when something is giving me an uptick in anxiety. I am having an outpatient procedure done before my upcoming surgery and the thought of doing it cold turkey is absolutely terrifying. After a truthful conversation with the pain anesthesiologist, we discussed getting some anti-anxiety meds in my IV prior to the injection. I’m honestly really proud of myself for doing that, because many past versions of myself would’ve said “I’ll be fine” and cried/paced/thrown up for the whole week prior to having it done. That’s what therapists call growth, friends!
Also, while it’s not really advice, I do want to validate what you’re going through and suggest — as much as you’re able — to block out the voices and relationships with people who are telling you not to “be anxious” or that it’s “no big deal.” Side effects are pretty common. Allergic reactions can surprise you. Traumatic appointments absolutely happen. Bad news has a 50/50 chance of arriving at your feet. And those experiences greatly shape your trajectory as a patient moving forward. Just because we are used to scary and hard things doesn’t mean they don’t affect us on an emotional and cellular level!
Got a question you want to ask us? Reply to this email or DM us on Substack — we’ll keep your identity anonymous! P.S. Our really professional lawyers (they wear pantsuits and everything) tell us we can’t dispense any kind of medical advice to the public, but we appreciate you thinking we could even do that in the first place. You’re a real one.
More Solicited Advice
How we feel about birthdays
My relationship with my birthday has changed a lot over time, and I’ve noticed my feelings around celebrating definitively correlates to how my chronic health conditions are affecting my day-to-day life. Do you all feel the same? How do you each approach your birthdays?
My anxiety regarding appointments usually relates to my tendency to disassociate/depersonalize when around other people (and the more perceived power the person has, the more likely it is to happen). A work around that I've found is trying to communicate in writing. I've found it very helpful to send my drs "agendas" via their portal before the visit and I include bullet points and any major relevant considerations I want to make sure get out there. Most drs have been pretty open to that and one is not, I take that as a message that it's not a fit and it's time to keep looking.
I even communicate with my therapist via writing, after each session I sit in the waiting room (I see her at a large health clinic with many departments, not just behavioral health, so it's not as creepy as it sounds) and write whatever is on my mind. If anything comes up during the week, I write that down too. Then before my next appointment I type it up and email it to her. At the start of the session she reads it and we go from there...
That said, I know I need to schedule a skin check as a very, very fair 30 year old. It's really to establish a baseline, not because there is a concern they might find something, so it's not really about anxiety of what they will find. The issue is that I'm having a very hard time finding a female dermatologist who takes my insurance and I feel safe enough with to let them look and touch in that kind of way. I'm also concerned I'll get some hurtful through away comments about my SH scars, and I wish there was a way I could find a provider who has worked with other people who has SHed in a respectful way.