Adventures in Anxiety: What I wish I knew about anxiety when I was diagnosed
At some point during my upbringing I learned about what was Talked About in Public and what was Talked About in Private. Stories about your day? Public. Stories about vomiting? Private.
Of course, it’s more nuanced than that. My new conclusion is that it’s not so much about the topic as it’s about your discussion partner. Navigating politics can be very hairy with some people, but easy enough with others, even if you disagree.
But this really smacked me in the face when I got divorced (wow, did that make people uncomfortable) and then later when I discovered my mental illness (ditto) — some people just didn’t want to get real and go there. Bringing up topics like this with some people shut a whole conversation down, as if you could catch marital problems or an anxiety disorder through the act of talking about it.
[There’s a vaccination joke here but I don’t even know what it is…]
Anyway, this was actually a relatively significant barrier for me when I first found out about generalized anxiety disorder. What in the holy hell was this thing and how was I supposed to get through it? It felt like a personal failure and a topic that fell into things that were Talked About in Private. But when we make our health an out-of-bounds topic, falsehoods and folklore persist instead of accurate information and firsthand experiences! If we can’t voice what is happening to us, how can we get the support we need to keep on fighting?
So as my fifth D(iagnosis)-Day anniversary approaches, I want to share with you the things I wish someone had told me after I was diagnosed to help me better understand what I could expect and what might happen to me. These things are true from my perspective and because everyone experiences mental illness differently they might not be true for you. Still, if you or someone you love is in the early stages of an anxiety journey, I hope these will help prepare y’all for what might come.
Medication might save your life. But it also might make it much, much worse. I’ve written before that the decision of whether or not to take medication for my anxiety wasn’t an easy one, but because I was in such bad shape it was sort-of a non-option for me. I greatly admire and respect folks who manage their mental illness medication-free (go you!). But please know that turning to medication is not a sign of weakness — it’s a sign that you are aware that you need a helping hand to get through this.
It took me an entire year to get on the right combination of medication so that the benefits outweighed the side effects. That year was by far the hardest year of the past five, mainly because I was often titrating (reducing the dosage of) one medication as I was ramping up on another, and I was so damn tired from all of it that all I wanted to do was sleep. Now that I have a new normal I can look back and say it was worth it; at the time, though I didn’t always feel that way.
One other downside to medication is that you will get some anxiety about making sure you always have your pills with you and, if you live in the United States, you might worry about how to get them reliably and at a cost you can afford. It’s much easier to manage mental illness when you have the money to buy what you need and are part of a health-care system that supports mental wellness. No one has to argue for insulin or heart medication — and no one should have to argue for anxiety medications either!
And speaking of medicine, Prepare yourself for the weirdest side effects you can possibly imagine. To make a very long story short, if you can think of it, it is probably a side effect of these medications (when I say “these medications” I’m primarily referring to SSRIs, SNRIs, and several anti-anxiety drugs — but more about that in my medication post). Some of these medicines can produce very adverse, highly-worrying effects (racing heart or panic attacks) while others deaden you completely (after I took a Xanax I would be blank for the rest of the day — like stare at a wall for 30 minutes blank and not remember what I was thinking about or where I was).
The weirdest side effect I had was from a straight-from-hell medication called Effexor. It took me six months to get off of this medication because when I titrated it too quickly I’d get dizzy, nauseous, and physically weak. Anyway, Effexor had this interesting side effect that they call brain zaps. They’re also called brain shivers and they feel like little shocks or zaps to your head, like your whole head is buzzing and vibrating. The first time this happened to me I panicked because it felt like my head was being microwaved. Then I learned that it’s not an uncommon reaction to tapering off of certain antidepressants, and for me this was just an unpleasant side effect of stopping this medication. That helped me better managed the titration as if I had brain zaps then my body wasn’t adjusting to the step down in dosage.
I’m happy to write another post about my current medications (Fetzima and Buspirone every day, plus Lorazepam, Intermezzo, and Lithium for flare-ups), but I’ve stuck with these because they’ve worked for me. I get a little bit of a buzz and headrush with my two doses in the morning but in the last year I’ve pushed through the nausea and my body has adjusted. They do make me take extra trips to the restroom (many SSRIs or SNRIsare diuretics) so I’m no one’s favorite road-trip buddy. Still, while it’s not my favorite, I can make it work.
Your weight is going to change, and probably not for the better. Ugh. This deserves a longer blog post because it has been the bane of my existence. I don’t know how much to attribute my new roundness to medication and how much to the metabolism drop of my 30s, but here we are. The medications I take are “new generation” meds and are supposed to be much better for certain types of side effects, including weight gain. What drives me bonkers is that I am always hungry even when I try all of the tricks (don’t eat late, drink water and wait 30 minutes, eat a small healthy snack, etc.). I. am. always. hungry but my metabolism doesn’t match that desire.
While some of this might be age-related, I did gain about 10 pounds during my first year of medication. In fact, to not feel horribly sick with some of the meds I would have to eat a little bit with each dose. That’s a behavior that I’ve had to unwind over the years as my body has adjusted. But the hunger has persisted.
Long story short, many if not most anxiety medications can cause weight gain if you are one of the lucky ones. I’m still making peace with that. At the end of the day I know that I’d rather have a little extra fat on my body and a clear head on my shoulders than be back in my anxious state.
Your gut is your second brain, so get ready for some dietary changes. Interestingly almost everyone I know who struggles with anxiety is also managing some intestinal issues. In fact for some of those folks the intestinal issues presented first and then the anxiety or, as in my case, the other way around.
I became lactose intolerant in my mid-20s and that was a huge pain-in-the-ass. I was a dairy queen and suddenly I lost milk, cheese and, worst of all, ICE CREAM. I adjusted. Shortly after I met Sergio he mocked me for my lactose intolerance… but guess who became lactose intolerant shortly thereafter?
You know what they say about payback.
Things stabilized, but then I started having all sorts of issues in 2015. My stomach was so distended at times it looked like I was five months pregnant! We joked about my food baby for awhile, but then it was so uncomfortable that it wasn’t funny anymore. When I went to a gastroenterologist I was told that I likely had Irritable Bowel Syndrome (IBS), an umbrella diagnosis for many of my symptoms. The practitioner recommended that I try a FODMAP diet to see what happened.
Friends, FODMAP changed my life. In short it removes certain fermentable sugars from your diet to relieve your symptoms. It meant saying good-bye to some otherwise healthy foods, foods that I loved (such as broccoli, asparagus, onions, and garlic), but I feel so, so much better when I “eat clean.” Through a few years of trial and error I’ve learned what works for me, and while I won’t fall over if I eat any of those foods, I’ll get that five-month baby belly back in no time.
Because I’m not high-maintenance enough, in the last year I developed two new sensitivities — eggs and soy. I was a huge fan of eggs and would eat them as often as I could because they are such a great source of protein, but when my big belly returned I got suspicious. Now just the smell of an egg turns my stomach. I can still eat things where eggs are a mixed-in ingredient (like cookies or breads) but I’ve given up my scrambled eggs, my eggs-over-easy, and my quiches. Soy has been easier to limit but I do love edamame and now I need to really watch myself when I want to pig out on those little pods.
I might write a future post just about diet modifications and their implications because it’s been profound. It does make it harder to travel and I need to do some extra research when I eat out (or pack snacks), but in the end it’s been worth it to feel better and healthier.
Get ready to put your therapist’s kids through college. Seriously, you’re welcome, kids! I knew that talk therapy could help me process my experiences and find productive things to try. I didn’t know how freaking long it would take to develop all of those behaviors and skills!
I had met my therapist a few years prior when I was struggling in my first marriage, so even before I was diagnosed and I had this “persistent health problem” I got back on her client list and started working through my feelings of hopelessness and powerlessness. Post-diagnosis we went into even more things as I learned to set new boundaries, manage my unhealthy thoughts, and forgive myself. It took almost three years of therapy before I “graduated.” If you would have asked me how long it would’ve taken when I started I would have guess six to nine months, or a year tops! I wish I had more realistic expectations of what it meant to work through my challenges. Of all of the interventions I tried for my anxiety, this was the best.
When you don’t manage your anxiety well, you won’t sleep well. Well, insomnia is the third leg of what I call the sucky stool — anxiety, gut issues, and insomnia. And I spent much of 2016 and 2017 sleepless — not just in Seattle, but wherever I traveled. And it was awful.
In my case, I struggle with two types of anxiety-driven insomnia. First, oftentimes I cannot calm my mind enough to fall asleep. These are generally in moments of great stress, normally work- or performance-related stress (performance in that I have to show up or behave in a certain way at a certain time and place). Developing consistent sleep rituals has greatly helped with this, but sometimes it just doesn’t work.
The second type of insomnia is the kind when I wake up halfway through the night — always at 3am, it seems — and can’t get back to sleep. Once I’m up my brain turns on and spins all sorts of terrible tales. Or I wake up from a vivid and distressing dream (thanks, medication!) and I can’t let it go and fall back to sleep.
Sleep is so critical to overall health but especially so when you’re battling mental illness. If I’m not at full cognitive capacity my reptilian brain is going to run the show, and that’s not good for normal functioning! I want to write a much longer post detailing my sleeplessness and how I worked through it, but something that made a HUGE difference in my sleep was the Sleepio course. I learned about it through The Company during a Sleep Week — they offered free enrollment and I jumped at the chance. It didn’t single-handedly solve my problems, but it helped a lot. For those days when CBT just doesn’t work, I do have a few medications that will help me fall asleep.
Rest assured — no pun intended — you can expect a longer sleep post soon!
Sensory overload is real, and sometimes it really sucks. So I’ve always been a bit sensitive to noise, temperature, and visual stimuli, but post-diagnosis this all went into overdrive. I’m not sure if it’s that I’m more aware of these sensitivities or the mental illness and/or the medication has made them worse, but sometimes I want to crawl out my skin, that’s how triggered I am. In my case, the biggest challenge I have is temperature. For most of my life I was always cold, but many SSRIs (like Fetzima) make you warm and sweaty (fun, right?). This is much harder in warm climates — I feel like I’m always having a hot flash, just a decade or two ahead of schedule! It’s super embarrassing to be dripping sweat after a moderate walk through the park or through the airport. I’m also much more sensitive to noise, especially prolonged noise or noise in tight spaces. I was never a big fan of concerts or clubs, but these days I avoid them at all costs. I also struggle with the everyday people noises when I’m stuck in airplanes or airports, so you’ll rarely see me in those environments without my noise-cancelling headphones, a Godsend for me. Lastly, I’ve always struggled with motion sickness or other visual overstimulation (lots of lights and colors, big differences in light or color — I used to get visually-triggered migraines as a teenager), but it’s gone into overdrive. Speaking of driving, I wish my poor husband knew how much his wife would need to drive instead of be a passenger in a car. To his credit, he has become a much, much smoother driver, and he isn’t at all macho about sitting in the passenger seat. But because of this I’m rather reluctant to let anyone else drive me around (and I have a barf bag in my purse at all times in case). It’s not you — well, maybe if you are a terrible drive it’s you. But part of this is certainly me.
Your anxiety will show up on your face, so take care of your skin. I feel like my skin has regressed back to my late teenage years and I’m dealing with breakouts and sensitivity that I never have dealt with as an adult. I’ve had to put my attention into better self-care routines because yes, stress does show up on your face! Thankfully I’ve found some nice new products (huge fan of Perricone MD products because they are gentle on my skin and packed with anti-aging ingredients) and I’ve made time to spend an extra 10 minutes a day reminding my skin that it matters.
You’re going to find out who your real friends are, and pretty quickly. If you ever want to do a friend purge, announce that you’re dealing with mental illness, and those folks who aren’t able to understand you or support you when you’re down will just — poof! — disappear. I lost my church family through this entire process and other friends fell away too. At the time it felt awful to lose some of them, but in the end while I have fewer friends now, the friends that I do have are there for me, even when I’m not a great friend.
Support means everything. Remember the folks who have stood by you even in your darkest days. This goes not only for friends but also for family. I think my mental illness was a bit confusing for many people close to me, and this might be the case for you if you are “high functioning,” a terribly confusing thing for people who know you well. My family took everything in stride but I know it was a shock for them when this all started. Honestly, my whole life was in pieces for the first year or two, and I was still relearning how to engage in normal activities. Many things I loved before were overwhelming for me, and as I learned more about myself I had to keep renegotiating boundaries.
My life is different and I am different.
I can’t imagine what Sergio went through. We had been dating for about 18 months when this happened. Even though we were in love, we had our own houses and still led our own lives. He could have walked away. He could have said, “Nah, don’t sign me up for a life of this!” as he watched me stare blankly at the ceiling from the bed or watched me cry on the couch, afraid of what was happening to me. But he stayed, and we grew through the experience together. Right after we got engaged people asked me how I knew he was the right person for me to marry.
It’s simple, really. In the darkest hours of my life when he could have stepped back, he stepped forward. And we’ve been side-by-side ever since.
I’m filled with guilt sometimes that I’m not as good of a wife, daughter, sister, friend, etc. as I used to be. Because let’s be honest — I’m not the easiest person anymore! I have restrictions and sensitivities and needs. But you know what? I’m also living a fuller and richer life. I’m also happier than I’ve ever been before. And I’m living without hiding behind a mask.
So yeah, I think it’s worth it.
This was a challenging post to write because it brings up all the feels. It makes me examine the ways I feel inadequate and “not enough.” At the same time, it helps me craft a different, resonant narrative for myself — I am strong. I am a warrior. I am resilient. I will take on whatever life has for me!
If you are at the beginning of your mental illness journey, know that you’ll face things you never thought you’d face. Some will be manageable; some will rock your world. Know that you’re not alone — there are many of us who have walked these roads before. We are here for you.
So those are the things that I wish I knew about anxiety and how it would impact my life as I was starting this journey. A few of these — namely medication and sleep — will certainly be expanded into separate posts. But if you’d like to hear about these or any other things I learned on this journey, share your thoughts in a comment and I’ll incorporate it into a future post!
Be well, everyone.
Hugs, Sarah
