Points in Time or Space At Which Something Starts: My Vestibular Story
My boyfriend says he can only tell when it’s really bad or getting there because I get a look in my eyes, and this isn’t even when I can’t hide it from strangers, friends, or acquaintances. He says he can tell when those rare times happen (so rare these days ), those times when I’m feeling better because my dizziness is lower and the head pressure is gone, the one that seems to grip and squeeze my head and won’t let go, he says he can tell because of my voice.
Because I sound like myself again.
Myself.
It’s a topic those of us battling with vestibular disorders (and other chronic and invisible illnesses) struggle with or did at one point throughout our journey. I’ve seen the hopeful inspiring videos of people who have found their way out, a treatment(s) that works, a way back to their new selves they say. Not their old selves. In all of these inspiring motivational videos that I find myself holding onto at my lowest because there IS something better that comes from this. You will find your way out of the darkness, the fogginess, the nightmare, whatever term you’ve attached to it. There IS hope, and that is what the vestibular community will teach you when you hopefully meet them. That there is hope, to never give up, and that the community will be there for you in solidarity and support throughout it because they were/are you at one point in time or currently.
However, my tough pill to swallow in all of these inspiring messages of hope was the common thread of you will get better days, but that you will find yourself enjoying these as your new self. What a lot of people outside of the vestibular community don’t understand is that while you’re battling all the physical symptoms that this is throwing at you, you have the cascading effects of all the mental health symptoms it throws at you. The isolation is immense even when you have someone next to you when you can’t find the words to properly explain how you feel, especially when you’re still undiagnosed. I went undiagnosed for years and so do many others in the community.
For many of us, our world from one moment to the next was turned upside down. While we grieve the loss of our independence, we’re also continuously grieving the loss of our former selves. We struggle trying to reconcile that our minds, our passions, and our interests, are the same, but our bodies won’t let us. I had to get past the anger at it. It only makes the symptoms worse and it’s not going to help me get better. But I, like many, had my phase of being angry at not being able to do what I loved to do, what I had always been able to do, and what we sometimes take for granted.
Especially, during times when I couldn’t walk five minutes, load my dishwasher, or do my laundry, who thought I would ever take that for granted? Not being able to take my long showers which I purposely used to relax took me the longest to accept, honestly, I’m still getting there. It’s a vestibular overload and more than five minutes in there I get what some people call the “shower drop” and the floor suddenly falls from underneath me and I’m quickly hanging onto the walls and paralyzed with fear.
Sometimes I struggle with wondering if I’ve gotten really good at hiding all the multitude of crippling symptoms that many times leaves me feeling completely disabled or these invisible illnesses are obviously called that for a reason, or if people in general just don’t pay enough attention.
Because the fact of the matter is that while we are also struggling with this invisible illness the world is expecting the same from us because we look the same as we always have to them. We look the same to ourselves in the mirror also. But we’re not. We’re in a battle full of minutiae where we have to overthink and over plan every single aspect of things just to go out, if we can even go out.
What are the triggers I have no control over? Let me look at the weather forecast and check the barometric pressure and hope for no thunderstorms. And I’m one of the lucky ones, for some people, any sort of big change in barometric pressure be it towards storms or a nice hot summer day sends their vestibular system into overdrive. Are there upcoming storms? Potentially? I better not worry about it, you see, stress is also a trigger. What about triggers I may have some partial amount of control over? As for my visual vertigo, if I want to go out let me take a road trip down a coastal town, or suburbs, instead of to the crowded city that triggers my dizziness. The same goes for where I sit at a restaurant, what type of shop I can go into, and how loud a place or situation am I stepping into since I don’t want to trigger my hyperacusis which is uncomfortable, painful, and in turn, will trigger my dizziness.
When I get invited to go out to a pub, bar-hopping, or restaurant (nevermind the fact that a lot of us can’t have alcohol, or are on special medical diets), or for a night out in the city, the usual places I used to get invited to by my friends, how am I supposed to explain all of this plus all of the other symptoms I’m leaving out? So instead, I say “I’m sorry, I’m not feeling well” or “I’m dizzy” to the few close people who asked about all the turned-down invitations, or simple variations of the same. The sad thing is after a few years without a diagnosis and no local doctors helping me find an answer, because, trust me I had to fight tooth and nail for every test they gave me. People either stop inviting you out or forget you’re fighting this illness in the first place because on the outside you look the same. And I got comments like “Oh you’re still on that dizzy thing? I thought you’d be fine by now.” Meanwhile, I’m struggling to keep it together moment by moment, day by day, not knowing whether I’ll make it till the end of the day at work that day knowing I have to because I need to make rent and I need to keep paying all these medical bills that keep stacking up from all these tests that hadn’t led me to a diagnosis then.
Because I sounded like myself again.
Honestly, he said these words casually and in passing, but when I heard this it took everything I had to not break down. He said them because he was really excited and happy to hear me sound happy again. Because when my dizziness is low and the head pressure was gone for the first time in over a year I felt as close to normal as I had and I was so excited even though I still had symptoms. But I could walk for about 20 minutes, with my symptoms increasing, but I COULD DO IT! I could do simple tasks again, even though I had to take breaks in between and I couldn’t do them all when I wanted to. So I was happy, but hearing that I “sounded like myself again” when I was still in the process of grieving who I thought myself to be before the vestibular disorder hit me like a brick.
I’m still in the process of grieving old me. Can I say I’ve reached the acceptance phase yet like others? I think I’m still processing, but I can say I’m no longer angry. I can say that I’m getting there. I may not be there yet, but I feel I will be. I can say that while I may not have wished for this, going through this experience has changed me in ways I never would have imagined. I’m much more aware when I’m out and about, or when I’m driving about stranger's experiences out there because you don’t know who else is going through something like this or another chronic illness that we cannot see. The slow crossing pedestrians that used to bug me while I was driving because they took too long and they looked young and healthy to me? I’m one of those now. Wondering if I’m annoying someone since I’m walking too slow because I’m extremely dizzy and trying to get somewhere and don’t have a cane or a pole or a way for them to see I have a balance issue. I look fine to them, but I’m not.
Who’s going to be this newly reinvented version of myself that comes out of this whole journey when I’m further along? I suppose we’ll see, but I’m excited to meet her.
Everything I knew took a turn in November 2021 when construction noises took me out of work for weeks with the worst migraine I’ve ever had and symptoms I had never had before, sent me to the hospital, and completely changed my life. I was hanging on to everything around me and “falling through everything.” Aside from a couple of periods of a month here and there in the past couple of years the dizziness has been 24/7. After years of begging healthcare professionals for help and being dismissed due to a lack of awareness about vestibular disorders.
I was finally diagnosed in April 2023 with Vestibular Migraines and PPPD. In hindsight, I’d had terrifying episodes in 2019 and 2020 that had been dismissed by doctors. After diagnosis, I found a Facebook support group by a VeDA ambassador that opened up the vestibular world for me and through there VeDA. I have the Vestibular Disorders Association to thank for too many things to count. I would not have even started treatment yet if it wasn’t for the resources they put out there since the doctor who diagnosed me declined to treat me. Through VeDA’s support group, I found ways to advocate for myself and now it’s my turn to pay it forward. I became a VeDA ambassador and volunteer and that’s where this blog comes in to share my story and hopefully other people’s stories in order to raise awareness about vestibular disorders. VeDA is also helping me run their first Spanish Online Support Group for people with vestibular disorders. Please check out their other support groups if you feel like you need support.
I’m passionate about helping others who were in my position and unfortunately, there are plenty of us out there. This, I suppose, is the beginning of my story. Stay tuned.
