Chronic Illness Stole My Identity #rwanda #RwOT #FRAFIN

Chronic illness stole my identity. And maybe that’s just what I needed.

For most of my adult life, I identified myself by my profession. The companies I worked for, the positions I held, the quality of work I produced and, above all, the recognition I got from doing it. If I was busy and with a “title,” I was fulfilled. If I wasn’t, I was failing. Busy and “titled” tricked me into thinking I was important.

But without those things, who was I?

Chronic illness ultimately forced me to come face to face with that question.

I’d been dodging it in the years since my first diagnosis, managing to hold a series of full-time jobs doing work I (mostly) enjoyed. With the help of medication, sheer will and the occasional white lie, I feigned relative normalcy to my employers and colleagues.

Still, working full-time totally depleted me. By the end of the days and weeks, I had little left to put towards any sort of life outside the office. I’d come home and fall onto the couch, wake up long enough to re-heat a meal and finish whatever work was left over from the day. And then fall back to sleep to do it again.

That lack of balance made me cling even more tightly to my work identity. It was all the proof I had that my life had meaning. Working gave me hope that I could still have a successful outcome in my professional life, in spite of my health challenges. So I developed an unhealthy (and sometimes unpleasant) entitlement to success because of what it took out of me to pursue it. It was only “fair” given what I had to give up.

“You will never find yourself in what you build to define yourself.” — “The Untethered Soul“

That was until my carefully crafted house of cards collapsed.

It began when the medication that had been sustaining me for seven years decided it had had enough. Those little white ovals that gave me life. That I had stashed in every desk drawer, pocket and purse. That I took ritually every morning with my coffee, paired with every lunch and turned to any time the day demanded more than I was able to give.

They weren’t supposed to stop working. The treatment, with all of its limitations, was supposed to be the compromise. If I had to live with an illness, then damn it, I at least was entitled to an effective band-aid. Didn’t they know how much I needed them? Didn’t it matter that my livelihood depended on them doing what they’re supposed to?

My neurologist was un-phased. He very matter-of-factly explained that it’s not unusual for stimulants to lose their efficacy over time. That eventually the body just develops a resistance to any noticeable benefits. To his credit, he remained steadfast in helping me find an alternative. For months we tried it all — varying drugs, doses and release times. Brand names and generics. Off-label experiments, combination therapies and even intravenous administration.

Around this time, as is often the case, came more bad news.

Our Atlanta office was closing and in two weeks I’d be out of a job. I had already begun the job hunt having seen the writing on the wall. But interviews felt like out of body experiences. I was watching this seemingly confident person talk up her skills and readiness, but didn’t believe a word she said. Still, I went through the motions hoping against hope that I’d get on a protocol of meds that worked. Just in time for me to start a new job and put this little road bump behind me.

The universe had different plans.

I didn’t know that this particular appointment would be my last. I expected that despite reporting to my doctor that the latest configuration of treatments wasn’t working, he’d have something else up his sleeve. I believed in my doctor because he was not only one of the best in his field, he hadn’t given up on me yet.

I was still imagining myself as one of the poster patients of his practice when he let out a big sigh and said:

“Unfortunately, Laura, I’ve tried everything within my toolbox. I just don’t think there is anything else we can offer you beyond the possibility of a clinical trial down the road.”

Wait, what?

What are you saying?

No, just… no.

This was it. He was it.

I have nowhere else to go. Like I literally have nowhere left!

My job had already ended, my insurance was now in limbo and I was too exhausted to even think about a plan B. Sobbing, I asked him a question I knew he couldn’t answer.

“What the fuck am I supposed to do now?”

He scribbled some stuff on a piece of paper that tried to explain why sleep disorders were so hard to treat. I know he wanted to help me. But there was nothing else he could do.

In the weeks that followed, I ended up with two job offers that in any other set of circumstances I would have jumped at. But in good conscience I knew I wouldn’t be able to handle the workload, let alone the travel. So I turned them both down. And then made the difficult decision to pack up 10 years of my former life and move back to my hometown.

And just like that, my days were no longer consumed with a long list of concrete tasks I had to get done — or else.

There were no more urgent deadlines. No more “catastrophic” consequences to whether or not a deck got to the client. I was no longer titled, and certainly not busy.

After I got over the initial grief, I convinced myself that I could still achieve “importance,” just in a slightly different context. That in no time I’d become a busy, successful freelancer and this would all make sense. That maybe I could no longer work a full-time job, but who needed that anyway? There was a reason for me having to finally surrender to the chronic illness I’d been trying to deny. And it was because I was always meant to be on my own. This was the universe putting its foot down, making way for me to become who I really was supposed to be.

But the inconvenient reality was that I still could barely keep my eyes open for more than an hour at a time. Without stimulants, I was so exhausted that even when I was awake it took every neuron in my brain to manage a cohesive thought. I stopped believing that I could still be busy and important and impressive under these circumstances. That there was no grand design to this after all.

And with that, I gave up altogether.

Without work or at least the pursuit of work, I needed a new identity to replace the one I was still grieving for.

I couldn’t just disappear for nothing. And I was far too afraid of just “being” without bearing some label that explained to the world that I was still a whole and worthy person.

So I frantically grabbed on to the only one that was left and became a “person with a chronic illness.” Occasionally I would get specific, when I felt like I needed to better explain why I had all but checked out from the world. Over time, I’d been diagnosed with chronic fatigue syndrome followed by Type 2 narcolepsy and eventually, idiopathic hypersomnia.

The bottom line was that my body had an irresistible urge to sleep no matter how much sleep it got. And that I felt painfully exhausted most of the time — despite just having slept for 12 hours.

None of these labels ever really suited me. I hated the prospect of anyone thinking I was just using an illness to garner sympathy. I hated the implications of what I was resigning myself to. I hated just hearing myself claim it out loud.

But I had no other concept of myself without work. And I certainly didn’t have any other titles to lean on for my sense of identity. Not only wasn’t I an employee or a successful business owner, I wasn’t a mother or a wife. And I had very consciously disappeared from anyone who knew me “before” things unraveled, so I couldn’t even call myself a friend. What was left for there to be?

A person with chronic illness was the only identity I felt qualified to put on.

So with this new, albeit it ill-fitting identity in place, I spent the next two and a half years as a full-time, over-achieving, professional patient.

My new “job” was to get this illness figured out so I could reclaim my identity as a working, contributing and therefore, whole person. I relentlessly pursued any and all explanations. Maybe it wasn’t a sleep disorder after all. Maybe there was some underlying, undiagnosed reason for my exhaustion that unlike hypersomnia or narcolepsy, was actually fixable. Maybe that’s why all the stimulants stopped working. If I could just find the right doctor, the right lab test, the right diet, the right medication. If I could focus and commit with enough intention and tenacity, I could find my golden key

Then I could finally get back to becoming who I was supposed to be. And everything would be OK.

But after two and a half years of trying, I’d yet to arrive at my triumphant resolution.

There was no silver bullet. No epiphany or cure. And all I had done in the meantime was postpone my participation in life. I had put everything on hold, resisting all effort until that one perfect day when I felt like my old self. It was as if I’d decided I had but two choices — to be all in, and at my physical, mental and professional best, or to not bother even trying.

With nowhere else to go, I wound up right back where I started — in the care of a sleep neurologist and taking some of the same stimulants I’d been on before. I found a configuration that finally brought me some benefits. Apparently my body was more receptive having been off of them for so long. Or my brain chemistry changed. Or there’s just no good explanation one way or the other.

The good news — I had more wakefulness to work with. A very artificial, strained wakefulness, yet one I still welcomed with open arms.

Despite having more physical energy, I was left with this enormous weight of disappointment and shame. I had nothing material to “show” for the past two-plus years. No successes professionally, personally or medically. No fairy tale ending to make it all make sense. I had maintained such a death grip on a particular set of outcomes, that I had left no space to deal with a different ending. No concept of who I’d be when things didn’t go according to plan.

Suddenly it was just me, with nothing left to hide behind.

The universe was shoving a mirror in front of me forcing me to face what I didn’t want to see. The person without a label, the life without a facade. I was cornered and the only place I could run was towards acceptance. And with the benefit of hindsight, that’s what I’d been avoiding all along.

First I had to accept my health — which meant accepting that I might not find a silver bullet or return to my “normal” self. I had to accept the limitations of doctors and my own determination. And I had to accept that not everything in this world has an easy answer.

Then, I had to accept my circumstances. Acknowledging that this was indeed where my life was at. That I made decisions that brought me here that I could either learn from or collapse under. And there were also factors that brought me here that were well beyond the limits of my influence.

Lastly, I had to start accepting myself. Without a title, a big salary or impressive comeback story. Without hiding behind an illness. Or using it as a way to prove my wholeness. I had to accept the person who was beyond the labels.

And acceptance didn’t have to stop me from living. I had to allow the space for all of those things to be true at the same time. I could accept my health as it was and I could still find fulfillment and pursue growth.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

I also had to learn that no matter how forcefully I tried to impose my idea of how things “should” be, the universe was not my personal bitch.

The universe, it turns out, doesn’t care about your effort, your desire or how many prior hardships you’ve already endured. And not only had I been fighting the universe, I had the audacity to blame myself for losing.

As far as my self-concept is concerned, it’s still evolving — with lots of therapy and self-work. I came to realize how the labels I clung so tightly too, were just distractions from the pain I didn’t want to face. Like why I was sad most of the time. Or why I never felt good enough in a crowd. Or why no matter what I had, it always felt like something was missing. Dealing with that pain is what’s allowing me to finally let go of all the things I thought I needed to do, just to be enough.

I still have to work at what it means to be me without attachments or labels. I still struggle to embrace the parts of me that can’t easily be explained to others. And I’m still feeling my way through an identity that isn’t so tethered to work and “success.”

But I’m getting there. Learning to let go and still moving forward. Accepting my limitations and knowing I’m still enough. Finding who I might be by letting go of who I should be.

And trusting that just maybe, the universe knows where to take it from here.


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