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The Answers I Gave to an Honest Inquiry About My Chronic Illness

Do you make plans?

Yes.

Do you follow through on them?

I end up cancelling half of them, on average.

Why?

My health is…limiting. And unpredictable.

And yet you continue to make plans?

Yes.

Do people get frustrated with you?

Yes.

Have you lost friendships?

Yes.

Have you had a point in your life where you had no one?

Yes.

How many people in your life are there now?

Enough to count on two hands and maybe a foot. I consider that a lot.

How many of those people know of your health struggles?

All of them, at least on an intellectual level.

How do they know?

I had to sort of “come out” to them. Otherwise they don’t get it. They don’t see it.

Or I don’t let them see it. Not sure which.

What do people see when they look at you?

A normal, if somewhat drawn, person. Who disappears frequently. There’s this profound disconnect between what people see and what is.

How does that affect you?

It’s incredibly alienating.

Do you talk about your health with your friends?

I try. But honestly? As little as possible.

Why?

I find it really uncomfortable.

How does it make you feel?

Abysmally self-conscious. It makes me feel broken and like a failure. And maybe a whiner.

Do you really think you’re broken and a failure?

Broken? No, I don’t believe that anymore. A failure? I guess that depends on your definition of success.

Is your inability to talk about your experience why you chose to express yourself in this Q&A format?

Yes.

How many people in your life (other than yourself) really, truly understand what it’s like for you?

One.

Who?

My husband.

Do you have a career?

No. Not really.

Have you tried?

Yes.

How many times?

More than I can count.

What happens?

I miss deadlines. I end up in the hospital. I pass out on the floor. I can’t keep up. I go on disability.

What causes that?

Migraines. A misfiring immune system. The rest…I’ve heard chronic fatigue syndrome, chronic inflammation, but who really knows?

Do you utilize disability accommodations?

Other than short-term disability, which I took with my jobs, no.

Why?

The burden of proof and documentation is high when your disability is invisible.

What proof do you need?

Doctors’ notes, records, lab tests, signed statements. And each organization (social security, public transit, etc.) requires a different set. It’s exhausting.

Do you consider yourself disabled?

In practical terms, yes. My husband likens it to me going through life with one of my legs chopped off, but everyone can still see it.

With the migraines, what are your triggers?

Fluorescent lights. Flickering lights. Screen frequencies. Jittery video. Dehydration. Lack of sleep. Hunger. Caffeine. The fucking alignment of the stars, for all I know.

How often did you have migraine symptoms?

Almost every day.

For how long?

At least a decade. And another decade of symptoms for over half of every month.

Have the new injectable migraine drugs helped with that?

Yes.

How?

They’ve made some of my triggers less… triggery. It might take more of them, or combinations of them, to start a migraine now. I still have symptoms, but only for about a third of the month. I still have to be obsessively careful about my environment.

What’s it like when a migraine starts?

Like the hand of God descends from the sky and hammers my head, neck and spinal cord. It’s game over.

For how long?

Depends. Three hours. Two days. Two weeks.

What are the symptoms?

Tilt-o-whirl dizziness. Overwhelming nausea, vomiting, shivering, sweating, extreme sensitivity. Pain. Ringing in my ears. Like severe seasickness while being hungover.

Do you ever wish you were dead?

Yes, but only until I feel better.

So, you wish you were dead when you feel really bad, but not when you don’t?

Yes. I wish I could be temporarily dead, so I could skip the abject suffering part. Then I’m good to go, albeit in a wiped-out kind of way.

Were you ambitious as a child?

Very.

Type A?

Yes.

Lots of accomplishments?

Yes.

Do you feel like you can be any of those things now?

No.

Do you still have those dreams? Of who you want to be?

Yes. They’ll always be there.

But?

I will never achieve them. I can only appreciate them. And mourn them.

What percent of a “regular” life do you figure you are living?

Probably around 25 percent of what other people around me can.

Have you had to rely on other people’s help more than if you were healthy?

Absolutely.

Is that hard?

Yes. Every time.

Have you ever had to rely on people who were not healthy for you?

Unfortunately, yes.

Are there silver linings?

Adaptations, maybe. Not silver linings.

Like?

I still love to learn, love to experience. I’ve taught myself how to cook. Well. I’ve taught myself how to take photos. Well. I spend a lot of time observing anyway. It’s natural to transition that to something more formal.

Can you maintain a regular job doing those things?

No.

Can you commit to a deadline?

No.

Can you exercise?

Sometimes. In very small increments.

Can you travel?

With accommodations.

What accommodations?

A place to rest during the day. Space to recover at the end of a trip. Another person to help out.

Can you watch movies?

Sometimes. Depends on how the camera is held.

Do you have to be careful around sick people?

Yes.

What kind of infections have you gotten?

Shingles. Pneumonia. Bronchitis. Strep. Scarlet fever. Kidney infections.

More than once?

Yes. For most of them.

Are you still surprised by your health? By what comes up?

Hell yes.

How much do you spend on medical care?

One-fifth of our take-home pay.

How many hours a year do you spend on the phone to doctors, insurance companies and pharmacies?

At least 200.

Do you go to a lot of doctors?

Yes.

Do they get all of what’s going on with you?

Most of them, no.

So why do you go?

Because I’ve broken my needs down into chunks, some of which doctors can help manage.

Like?

Hypothyroidism, asthma, recurrent infections, hives, inability to stop vomiting.
Doctors help with these?

Those are some of the things they can ameliorate with specific, existing interventions or medication.

Did you try to get concrete diagnoses for everything?

Yes. I went through a couple of phases of trying to define and diagnose everything.

Did you get answers?

Some. The firm diagnoses I have now are a result of that.

But?

Some symptoms still don’t have explanations.

Why?

There are some doctors who simply don’t believe me; they assume I am making it up. I must be, if it’s not quantifiable and measurable: on a lab test, on a thermometer, on visual inspection.

Do some of them believe you?

Yes. But in practical terms, there’s little they can do to help.

How long were you sick before you got a diagnosis of chronic vestibular-type migraine?

Fifteen years.

Do you feel like you now have correct diagnoses?

Yes and no. The more I learn about migraine, the more a huge portion of it fits. But the systemic issues, immune abnormalities… there seems to be a limit to what modern medicine knows.

How does that make you feel?

Resigned. But it’s better than tilting at windmills.

So, are you making any of your symptoms up?

Hell no.

Do you ask yourself that question? “Am I making this up”?

Frequently. Still.

Why?

Because if I am making it up, it’ll get better when I stop making it up.
And the answer?

Definitely not making it up. Still.

How long have you managed these health issues?

More than half my life.

What was it like when you first got sick?

Confusing. Terrifying. An abyss. It got better for a while. And then it got worse. And stayed worse.

Did you make changes in your life?

Not at first. I fought it with everything in me. And couldn’t figure out why things kept falling apart.

And when you recognized that you wouldn’t be able function like you used to?

Honestly, I went through the pretty classic stages of grief. But it was a nebulous endeavor, partly because I was still so in the dark as to what was going on.

Is there a mental health component to all this?

Yes.

What kind?

With any chronic illness there are mental health repercussions. Any time someone loses the foundation of a life, from which almost everything personal and professional is built.

Are your mental health issues a primary diagnosis?

No.

Would it matter to you if they were?

No. Except maybe I’d have more treatment options.

Are there mental health and physical health interactions?

Yes. Definitely. But not ones you wouldn’t also find in someone with AIDS or severe MS, say.

Does therapy help?

Yes and no.

For example?

With the consequences of the situation, with the ambiguity of the illness itself, with the uncertainty of outcomes, yes. With fixing the actual problems, no. With other parts of my life that historically have made me unhappy, that I have found difficult, yes.

Is there anything else therapy has taught you to do?

How to mourn a life I’m still living.

What have you lost?

Everything except immediate family — a couple of times. And most things a lot more times than that.

Does that mean you have nothing?

Definitely not. I have a lot. Built slowly, one at a time, but still a lot.

Do you consider yourself exceptionally lucky or exceptionally unlucky?

Both.

What do you no longer believe in?

Pure self-determination. Achievement through force of will. Fairness.

What do you believe in now more than you used to?

Grace. Connection.

Do you believe being ill is a blessing in disguise?

No.

Do you believe everything happens for a reason?

No.

Do you believe being ill has made you a better person?

No.

Do you still make the same choices about what matters?

No. I’m ruthless about what I choose to spend my (limited) energy on. There’s a ton I simply ignore.

Like?

What to pick? Don’t check out the inside of my car.

Do you still feel like you make the wrong choices?

Not often.

What comes up on a day-to-day basis that people might not think of?

Suddenly not being able to pick up my kid from school. Lying on the floor getting my calories from a cereal box, too dizzy to stand. Not being able to get home during an attack. Walking out of a parent/teacher meeting because I’m about to throw up. Having to sit down in the middle of a shower. Not being able to wear my glasses because I can’t stand anything touching my head.

What’s still hard?

Having only one income. The impact on my marriage of having a lot of needs, the actual voicing of those needs, and the second arrow, the guilt, of having those needs. The feeling of being a burden. The delicate balance of giving and receiving love within a family setting.

Do you still apologize for being sick?

To my loved ones, yes. Frequently.

What do you enjoy these days?

Dancing around my kitchen. Watching my loved ones be happy. Finding that perfect candid photo in a batch of uploads. Reading a good book. Consuming (and preparing) interesting food.

Are you always physically able to do these things?

No. But eventually.

Do you still see beauty?

Now more than ever.

Do you have hope that you will ever get better, long-term?

No.

Do you have hope that life is still worth living?

Absolutely.

Photo credit: primipil/Getty Images

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