What It's Like to Have 'Intermittent' Agoraphobia

One of the most frustrating things about living with an intermittent disability is the quiet but deep sense of betrayal when it flares up again after a long break.

I have been dealing with my psychiatric disability for most of my life. The first episode I remember was when I was 12. There may have been others before it, I don’t know, but age 12 was the first time I realized it wasn’t “normal.” I’m 28 now. I’ve lived more of my life with this than without it.

By this point, I am intimately familiar with the pattern of my disability. It is intermittent. It flares up and it fades down. I have good days and bad days, good months and bad months. On a logical level, I know how the whole intermittent thing goes. On a logical level, I accept it. This is a thing my brain does.

I know that there are months when I am very functional. During that time, I can pass for quirky but mostly “normal.” My dysfunctions are tame and toothless. My social skills aren’t the best. I come across as much younger than I am. I’m timid about situations that don’t spook other people. But for the most part, life goes on. I can do what I need to do, even if I have to fight a bit more to make it happen. I struggle, but for the most part, I succeed. I only teeter on the cusp of disability.

And I also know there are months when I am scared of my own shadow. During those months, I become so intensely risk-averse that I can’t tolerate any degree of novelty. Everything is suddenly too loud and too close and has too much uncertainty to bear. The world is painted in shades of threat and avoidance. I can barely leave the house. It takes me days to recover from the stress of something as simple as buying my own groceries. I quit jobs, fail classes, end relationships, burn bridges, can’t return calls or emails and generally slide off the face of the earth into my own black hole of immobilizing anxiety, population: 1. During those months, I don’t teeter on the cusp of disability anymore; I careen into it head first.

It is intermittent. It gets better and worse.

But during the good periods, if the break lasts longer than usual, I pass for normal-ish well enough that I slowly start to fool myself. I tell myself that maybe this is what my life is like now, first quietly and then with increasing conviction. I’m a little less strict about my safety nets and boundaries. I can afford to be less rigid. I don’t need as long to recover. Over time, I start feeling like a fraud when I mention my disability, because I don’t feel disabled most days. I feel guilty for asking for accommodations because some days I don’t need them.

After it’s been better for a while, there comes a day when I catch myself wondering if maybe I’m over it For Real This Time. I wonder whether I’ve finally “grown out of it” or conquered it or found the right meds or found an environment where I can thrive — if after all this time and turmoil, I have somehow finally arrived at “Better.” I compliment myself on my new coping skills and much healthier habits. I tell myself this is a thing that can be controlled and look, now I have controlled it, see how successful I am. I start to wonder if I was ever even disabled at all.

Logically, I know my disability is likely to flare up again because that is what intermittent disabilities do. But in my heart of hearts, I start to hope (and then gradually to secretly believe) that maybe it won’t come back this time and I will just stay better. Forever.

And then there’s a bad day after a long break. But that’s OK, everyone has bad days.

And then there’s another.

And another.

And then the bad days are outnumbering the good.

Then I’m not rebounding to normal in between them anymore — just shades of more and less dysfunctional. Obligations pile up unanswered. The longer I avoid them, the harder they become to deal with and the bigger my sphere of avoidance gets. My world shrinks smaller and smaller. I’m irrationally afraid of things I know I was handling just fine a few weeks ago — things I logically know are not threatening, but I am still afraid of anyway. Mental illness doesn’t care about your logic. If mental illness listened to logic, it wouldn’t be mental illness.

And there’s me stuck in the black hole again, in spite of all of those coping skills and healthy habits I was so proud of, still not better yet.

And the moment when I realize it’s not just another bad day, when I admit to myself that it has crossed the line into something bigger again, there is this quiet but intense sense of grief for that fictional normal life I told myself I was going to get to live now that I was “probably better.” Not just regret for the fact it’s bad that day or even preemptive stress over the whole bad episode, but one more reminder that this is something I’m likely stuck with forever. It can probably be improved upon, but capital-B Better (as in well, as in not going to get sick again) is likely not in the cards for me in any big picture way. So I quietly fold those big dreams back into a disability-sized box for the hundredth time.

You’d think that accepting it would be on autopilot by now, but it’s not. Every time it gets bad, I go through a private mini-mourning all over again for the normal life I suddenly remember I don’t get to keep, just borrow sometimes. And somehow it always feels like a surprise.

But the funny thing about chronic illnesses is that they’re chronic.

The funny thing about intermittent disabilities is that intermittent means they come back.

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Thinkstock photo via Peerayot