Raise your hand if you had no idea that your body had a vestibular system until you fell ill? When my doctor told me that I had a condition, called “vestibular migraine,” I was completely dumbfounded. I was dizzy – how could this be a migraine? And what the heck is vestibular?

For many, a vestibular disorder will completely change your life from the way that you knew it. Your balance is suddenly swept from you, and you will find yourself on a journey desperate to find your old self. When I first was diagnosed my counselor said something very interesting to me. She told me that I would have to learn to mourn my old life to be able to accept my “new normal.”

Looking back now, I truly had to go through the stages of grief to be able to start living my life again, which is why I want to share these stages when it comes to chronic illness.

Stage 1: Denial

I was in complete denial when I first got sick. I chalked it up to a cold that would only last a few weeks. I was completely healthy, so how could I suddenly have a sickness that would always make me experience balance problems? I remember when I first started researching vestibular migraine, I stumbled upon a support group where someone was talking about having this disorder going on 12 years.

12 years!? Excuse me, but I am in my 20s and have a life to live. This can’t be something that goes on for more than a few weeks. I kept telling myself that it was in my head, which only caused more anxiety in the long run. The denial stage would go on for a few months for me.

Stage 2: Depression (and anxiety)

The stages of grief can vary, but I went through depression after denial. It was becoming evident to me that this wasn’t going away. I was in a constant state of anxiety because I couldn’t control the most basic function as a human in terms of walking straight. I was canceling all my plans with friends and was in a state of constant terror of when the next “Alice in Wonderland” symptom would rear its ugly head.

I remember sitting on the floor in my bedroom using a meditation app to keep myself from having a panic attack before a work Christmas party. I had always been a SUPER social person and the fact I couldn’t go out in public without wanting to fall down caused SO much anxiety for me which led into a form of depression. (That was a big reason I started seeing a counselor and working on self-care.)

A lot of people are now experiencing this with the COVID quarantine. It’s a horrible feeling to know you can’t leave your house. Feeling stir crazy is a real thing.  

Stage 3: Anger

At this point, it had been a few months now, and nothing was changing. I was stuck at home, couldn’t drive, had a doctor telling me it seemed like I was experiencing a psychological problem and had been misdiagnosed with Multiple Sclerosis a few times. Why couldn’t anyone figure out what was wrong with me? Why did this happen to me?

I remember feeling angry that my dizziness was not subsiding, that my friends and family didn’t understand and that my relationships and career were suffering from this balance issue that I had, and I still lacked answers. Not to mention that any medication that was prescribed to me only caused me to feel worse.

At this point I was racking up medical bills only for doctors to tell me I was crazy or misdiagnose me. The thought of seeing another doctor just to be dismissed was causing for me to hit my breaking point.

Stage 4: Bargaining

After a few months of searching for a diagnosis, an ENT at the Dallas Ear Institute properly diagnosed me. She informed me that after all of the testing that was done, they concluded I had vestibular migraine and that, unfortunately, this was something I would probably be dealing with the rest of my life.

A month later I would find myself in Dr. Beh’s office for him to tell me the same thing but also explain that I had a thinning of my skull that is likely contributing to the problem. Then I saw an Otolaryngologist that same day that worked with Dr. Beh. He explained that I must have had vestibular neuritis when I first got sick and that it appears it damaged my vestibular nerve. Hence the fact why my dizziness got better over time but still was causing me to only feel 70% myself.

I remember leaving that day feeling COMPLETELY overwhelmed and crying. How in the world did I have so many contributing factors going on in my head. A birth defect (thin skull) that played into this diagnosis? The fact that I had vestibular neuritis and never knew? All of this led into the bargaining stage of grief. For about a week, I sat around with “what if” statements flying around my head.

“What if I would have gone to the doctor sooner? What if I just listened to my body from the get-go and didn’t ignore what stress was doing to me. This is my fault.”

“If only I would have enjoyed and not taken my balance for granted.”

Those thoughts then progressed into me tapping into my spiritual thoughts.

“God, I promise that I will do better if you help me return to my old self.”

Stage 5: Acceptance

It took me around a year to find some sort of acceptance with this condition. To be honest, I went through the stages of grief a few times before finally accepting this illness.

And as I said above, the idea of mourning my “old life” was what helped me get to a place of acceptance. It was clear that my life before my vestibular disorder was in the past. If I wanted to start living again, I would need to learn to accept my fate. That took time, but after prioritizing my self-care, advocating for my health, and finding a treatment plan that was creating results, I would start to realize that I could become happy again.

I think working on my anxiety and not hyper-focusing on every bout of dizziness definitely helped, too. I was learning that this was my new normal, that there were products and medications I could use to help achieve a sense of normalcy and that life wasn’t over.

It’s been almost 4 years now with VM, and while I still feel the effects of it daily, I refuse to let it get me down. I have learned a lot about myself through this journey in the sense that I’m strong and capable of getting through something life-changing. This journey has also helped me cope with times of uncertainty like COVID.

You never know what life will throw at you, but it’s your choice to either let it consume you or find a way to become better from it.