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Recovery From Mental Illness Isn't Always Linear

"So what's it like now you're better?" Dealing with questions about recovery.

Lily Bailey, photographed by Amy Shore
Source: Lily Bailey, photographed by Amy Shore

Over the last few months, there’s a seemingly small question has been rudely interrupting my daily life.

I hear this question before it’s spoken. I see it in the lilting, encouraging smiles that people sometimes give me when I tell them that I have written a book about having a mental health problem. They nod their heads and say how ‘brave’ it is of me to "put my story out there" by writing about my "journey". Key mental health buzzwords played, they tilt their heads and raise their eyebrows to convey both compassion and sustained intrigue, and I know it’s coming, The Question is here:

“So, what’s it like now you’re better?”

Followed by the words I’ve become accustomed to saying:

“It’s great. Yes, it’s really, er, great.”

Because it is great. And I am a lot better. Until a few years ago, I lived my whole life as a slave to the thought that I was a bad person. Everything (and I really do mean everything) I did was wrong. Did my eyes look at a weird part of that child’s body, and if so, would people think I’m a pervert? Did I smile too much, or did I not smile enough? Did my voice come out funny when I said hello? Could I kill someone with a thought?

These thoughts ran the show, and the only way I could cope with them was to make lists of all the things I could possibly have done wrong. Every day, I would remember hundreds of actions that would seem pointless to other people, but that I held to be the only thing keeping me from an eternity of evil. Different obsessions and compulsions have come and gone throughout my life. From thinking that only I could stop my sister's dying in her sleep (by making sure that she was breathing throughout the night) to becoming convinced I must wash my hands all the time so I didn’t get sick or contaminate other people, the mental torrent seemed unending.

Aged 16, I decided to lie in bed and not move anymore, because it was easier not to do anything wrong that way. I attended an appointment with my GP, and I finally cracked. “I have these awful thoughts,” I said. “And they just don’t stop.” She diagnosed me with OCD, which seemed off to me. I vaguely associated OCD with being a perfectionist and liking things to be neat. My room has always been a tip. I did not know that to have OCD all that is required is that you have obsessions (repeated, unwanted thoughts), and that you respond to them with a compulsion (the action taken, whether physical or mental, in response to that thought), and that these obsessions and compulsions cause you significant distress. I wish I had known that. It would have saved many years of my life.

I was referred to a psychiatrist, received Cognitive Behavioural Therapy (CBT), and was prescribed psychiatric medication. CBT is a therapy where you consider how thinking in other ways and responding to obsessional thoughts differently can positively change the way you behave.

That was the start of me learning how to manage my OCD, and it certainly wasn’t all smooth sailing from there. Three years later, things spiraled out of control again. I dropped out of Trinity College Dublin, where I had been studying English Literature, and spent time as a psychiatric inpatient. Thankfully, I had access to good therapy, and my life is far better now. I can get up most days and enjoy simple things like reading a book or walking my dog—normal things that normal people probably take for granted, but which mean the world to me. Not doing compulsions means I have spare time, and I get more done than I thought would ever be possible for me. I am not lying when I say that being better is great.

It is comparatively great.

But there’s something I don’t say. Something I keep to myself because people seem to like happy endings that leave them feeling fuzzy and inspired. They don’t really want to hear that you’ve written a story about your recovery with a messy little epilogue:

“I’m not actually recovered.”

Or worse:

“Well actually, I slipped back again this weekend. I spent two days sleeping so I didn’t have to engage with compulsions.”

Why not just say it? Well, for one thing, I have found that while people are becoming more comfortable talking about your mental health problems that are now in the past, the idea of on-going ‘issues’ may send your conversational partner running. People love to congratulate you on your amazing recovery. They find it harder to listen when the going gets rough.

But lately, I’ve wondered if sparing people’s discomfort is the only thing that keeps me from being brutally honest, with others and also myself, about my state of mind. The thing is, I believe in recovery. Or at least I sort of do. Sufferers and professionals are divided on whether you can ‘get completely better’. Often, it seems that those who have recovered get a tad evangelical—they become Twitter crusaders, proclaiming that recovery is always possible, for everyone, everywhere, and that those who haven’t recovered just haven’t had the right therapy, or aren’t trying hard enough. On the other hand, those who haven’t recovered can get a bit morose. They want you to know that OCD is a lifelong condition, and that it will always be there, lurking, in the shadows, even if you think it has gone away.

I have seen other people with OCD make full recoveries. I believe in recovery in the same way that I believe in aviation: because I have seen it happen so I know it is real.

Meeting other people who have recovered has been inspiring and life-affirming to me. But I think, perhaps, I have been a teensy bit desperate to be at the stage where I write a book and present myself as a member of the happy-and-recovered-crowd, purely because I know how much hope that has the potential to offer others. Because if I want to scream from the rooftops, “Power to all OCDers! THIS IS NOT A DEATH SENTENCE!” then shouldn’t I be able to help spread that message by telling people about my own recovery?

Instead, I find myself wondering: Have I come to the end of the line with therapy? What do you do when you know what you need to do but you can’t seem to do it? When, oh when, will I be completely better?

Unfortunately, I don’t have the answers to these questions yet. This does not mean I am giving up. Far from it. What it means is that I continue to try to apply what I have been taught to my life as often as I can, and I surround myself with people who understand, and who can support me.

I’ve also decided that when asked what being better feels like, I’m going to be more honest.

I realize this might sometimes make people uncomfortable, but stuff that. I’m not completely better but I’m still better than I was before. So there, that’s my happy ending—share it with me if you want to.

I also realize I am now not going to be the mind-blowingly-inspirational-total-recovery story I had hoped I might be for other sufferers. But perhaps, I have decided, it is also good for people to know that there are people out there who haven’t totally recovered, but who are still happy, and a lot better than they were before. I think I would have liked to have known that.

So from now on when presented with The Question, I will say this:

“Being better is great. I’m not totally recovered though. Sometimes I have terrible days. I am still ‘journeying’, as you Martians call it, and I have a lot to learn.

“I’m not always OK, but that’s OK too.”