How I Make Sense of Chronic Dizziness
“Sorry I can’t come, my husband is dizzy.”
It sounds ridiculous.
Why would I need to cancel something because my husband is a bit dizzy?
And people’s natural responses sounded ridiculous to me.
“Ok, make sure he drinks enough water.”
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| Photo by Francesco Ungaro from Pexels |
When we arrived in Australia we expected reentry/culture shock. We knew we were going to be in a different world and that that would mean stress and disorientation.
It’s an inherent part of your life when you’re an Aussie married to a Cambodian. I’d read books and blogs, talked to people, made my own lists of my own experiences so far. I was expecting the first few months back in Australia to be extra hard.
Being uprooted from the familiar and landing in a new place is exhausting. It helped that we expected it and we could understand where the stress was coming from.
Even though we anticipated this, it was still stressful and painful. Some things might not have been obvious at the time. But later we could look back on it and notice the role culture shock played.
So we entered a new country, Australia. At the same time we also entered the world of undiagnosed debilitating sickness.
We didn’t know we were going into it, and so there was no preparation or expectation of what it would be like. I don’t think I even knew such a world existed.
Unlike culture shock, we had no way to prepare and often no way to even know where the stress was coming from.
Why is a world of undiagnosed debilitating sickness stressful?
Stress #1
Seeing my spouse in pain was bad enough. But not knowing what it was, not having a name for it, not being able to do anything about it — made it worse. There were a few times of acute pain when I actually thought Soeun was going to die. And many months of feeling like he had disappeared under a heavy pile of symptoms. It was hard to imagine that he would come back, as despite all the things we tried he was not improving.
I could see how The Dizzy Monster had transformed him. Since it began its attack the 24/7 fight with it exhausted him. But doctors could only see negative test results, and to others, he looked normal. On one hand, it was a relief when we got the brain CT scan results back and it was all clear. But also frustrating as it meant the enemy was still invisible.
Stress #2
Unsolicited medical advice is a normal part of life for a chronically ill person. The internet is full of articles on how to handle it, and mocking memes. When I learnt this 4 years after the fact it was a big relief!
It’s usually with good intentions. Your friend (or a random guy on the street) tells you that his neighbour tried cutting a certain thing out of his diet. It worked for them so you should try it too and you’ll be better in no time.
When advice is coming at you from many people, and you’ve already tried lots of things it is a source of stress. But because you can see the giver is trying to help you feel you should be polite and say thank you.
Stress #3
Social isolation is another part of chronic illness life. Before entering dizzy world receiving a dinner invitation would have been fun. But it became frustrating and disappointing. We would say “yes” to an invitation but on the day Soeun would be sick so I would end up going by myself, or not going at all.
As a few one-offs, that’s kind of ok. But when it becomes a general pattern it makes life hard. Not being able to keep commitments. Not being able to show people they are important to us by spending time with them. So it’s easier not to make plans, then we don’t have the disappointment of breaking them.
We had a community of people around us who were trying to care for us. We found that even when friends asked how they could help we didn’t know how to reply. The double whamming of entering the two new worlds at once was overwhelming.
Fast forward to now
Almost a decade, two kids, and many house moves later, we are still struggling to live with The Dizzy Monster. But here in Cambodia Soeun’s symptoms aren’t debilitating. Sadly our old normal is gone but the real Soeun is back and we have a new normal.
The stresses didn’t go away when a doctor described his symptoms as Vestibular Migraine. It’s a little-known, little-understood condition so in some ways receiving a diagnosis didn’t make it easier.
Telling people he has Vestibular Migraines seems to make them think he has a headache or a sore ear. These commonplace illnesses don’t describe our experience at all. A huge transformation took place when The Dizzy Monster joined the family.
I could never have guessed what a big impact this would have on us. I thought it was like any other stress we’d had before, that the memory would fade with time. But all these years later making sure he drank enough water feels like putting a band-aid on an amputated leg.
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