I have a long-term severe and chronic metabolic disorder. Most days, I have a few good hours. And earlier this year, my condition stopped me in my tracks.
Up until this point, I derived my worth from my career, from my income, from the community involvement, from the sheer amount of valuable projects I could get my hands into. But as a career-focused 35-year-old, I found myself facing a difficult decision.
It was time for me to face the fact that I could no longer work a traditional, full-time, 40-hours-a-week job. Needless to say, this was a heart-breaking situation for me, as I know it is for professionals everywhere. Here’s how I knew it was time.
I was working full-time, but slowly by a sheer plummet in energy level, I was taking on less and less. First, the leadership roles had to be delegated. Next, the networking and volunteering fell away. Soon after, my social life began to shrivel up to friends who were comfortable enough sitting by my side during infusions, in the hospital, or while laying on my couch in jammies. I couldn’t be there for people or the causes that were once so important to me.
I was working full-time and doing my best, but all the while my body was screaming.
Let me back up a bit. I have acute intermittent porphyria, a life-threatening and rare metabolic disorder for which there is no cure. Before I was diagnosed, and even after for a handful of years, I worked full-time as a social impact graphic designer and communications professional, in a traditional 40-hour a week position.
But it wasn’t pretty. Curled up in the fetal position with pain, I still tried to work on my laptop. I attended conferences and speaking engagements with little to no sleep, too nauseous to eat or drink. And yet, I continued to prioritize my job.
Society rewards hard work, fancy titles, and large paychecks. Expectations to get involved in community events, networking and fundraisers are strong. With a chronic condition, it’s difficult to manage this pressure. With chronic pain and illness, it is often impossible to live any way but a day at a time. Planning is hard because symptoms come and go, in varying degrees of frequency and with little to no warning.
When I was diagnosed, I learned that medical intervention would require, on average, more than 10 hours of my time per week. On top of that, the regular appointments with specialists near and far, some that are scheduled in advance or some that are scheduled around flares. Not to mention self-management of my symptoms, including increased sleep and rest during the day.
I went into work on my weekly treatment days, staying in the office right up until the very minute I needed to leave for the clinic. Then, I would continue to work from the waiting room, doctor’s office, and while hooked up in my infusion chair. (I later came to learn that I was known by the chemo patients as “the girl with a laptop,” not the reputation I wanted, nor the image I would choose to portray in that situation.) But I was desperate to continue demonstrating my worth and my value through working. I wanted to be superhuman, to both have a life-threatening chronic condition and not let it stop me from doing what I wanted to do. I think there’s a medal for that… right?
But seriously, I thought a full-time job embodied my accomplishments and defined my worth. I didn’t want to lose that, because if I lost that, what is left?
Like most things you force, they eventually crack. And in my case, working full-time at this rate evoked a full-fledged porphyria attack. In crisis, my colon was paralyzed, I was too weak to walk without assistance, and I endured incapacitating pain for weeks. I tried to work through it, which seems silly now. After I landed in the hospital, I had to face the facts that had slowly been building around me.
I was not giving myself time to heal, to be, to live.
In order to truly live, I needed to give myself time. Recovery is nearly constant with my weekly treatments; I needed to give myself space to rest.
For me, this meant stepping away from traditional, full-time work, in order to embrace porphyria for the full-time challenge it is. I understood that as long as I was working full-time, I would continue to prioritize my work over my health.
Here’s how I determined a traditional, full-time job was not a good idea for me.
• I could not be there for those I loved. During nights and weekends, I was so utterly exhausted that I found myself choosing between my health and my family.
• I am the only person who gets to decide how I will use my energy. I have just a few good hours in a day, and I realized I was giving them to my employer. My energy is precious and no one will protect it for me.
It’s easy to get trapped in thinking that your work is slipping or that you are the weakest link on your team as a way to justify stepping away from a 40-hour-a-week gig. But I found it best to focus not on your effectiveness at work, but your ability to parent, support your partner or be there for loved ones.
Many employers have processes in place designed to allow you to incrementally walk back from your full-time position, such as FMLA and short-term disability. Even taking long-term disability doesn’t mean that it will be forever.
I recommend journaling about your feelings surrounding the decision. Consider the judgments on yourself, which can be hard to do if your illness or injury causes an abrupt change in your ability to work. And when emotions run high, it’s difficult to think logically.
Find your go-to person, someone who will love and support you in this situation no matter what. While you are making your decision and taking necessary steps with your employer, keep in open communication with your go-to, as well as your family. If you feel comfortable opening up to a co-worker, you may greatly benefit from her perspective of your job management ability as well.
During this difficult process, I found it most helpful to remember that I have to do the right thing for my body, my family and my healing.