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Today we are hearing from Megan Dohm, a freelance writer and photographer from Raleigh, North Carolina. She is an over-analyzer, a book lover, and a museum wanderer. She is passionate about helping people find beauty in the midst of reality's thistles and thorns, and can usually be found curled up a sofa, working on too many pending projects.
“I mean, you can call it M.E. if it makes you feel better to have a label,” the doctor said off-handedly.
Sitting there in a thin paper gown, tears pooled in my eyes as I tried to come to grips with the half-hearted diagnosis I had been avoiding. Before getting sick, I had been a goal-setter, a mover and shaker with the energy and drive to make stuff happen. For the year and a half leading up to this point, I had been experiencing the symptoms most people have the last day of a flu: whole-body weariness and muscle aches. On the bad days, I discovered muscles I didn’t even know existed. Did you ever think about the muscles under your scalp, or eyebrows, down in the very tip of your toes? Me neither, until I had to lie awake at night, aching.
Leading up to my diagnosis, I had been skirting around the fact that my condition could be a chronic one. If it’s one of those long-term no-definite-treatment ones, I’ll cross that bridge when I get there. On that August day, under the fluorescent lights in my paper gown and eyeliner that was smudging away, I had officially reached the bridge. The thoughts that crossed my mind in that doctor’s office rattled around in my head for weeks, catching me off-guard and causing me to crumple wherever I was - in a drive-through, in church, even in my sleep.
There’s not a pill for this one. This is not short term, this is for life. It’s possible that I will never escape this exhaustion. All of those plans I put on hold until I sorted this health thing out, are they just permanently on hold now? How am I supposed to dream big when I have to muster up energy to shower? Why is my body like this?
So, so many questions and so many flawed answers. Over the last six months, I have learned to put the questions to rest by simply doing the next thing. Practicing yoga a couple of times a week and making some dietary changes have helped make the illness manageable, and I am still making little alterations to make normal life sustainable. Mentally, I have shifted from a place of denial to general acceptance (although I still have my days). The transition out of survival mode into sustainability means progress by degrees; it means trial and error, false starts and making some not-so-fun adjustments - but it makes life doable, and dreams pursuable.
Although chronic illness can be isolating (both physically and in terms of experience), if we begin to speak about our experiences, chances are that other will people come out of the woodwork and the load will be lightened. Although I am fully aware I am not speaking from a pedestal, I certainly hope that some of my experience can help others in the same boat.
"Although chronic illness can be isolating (both physically and in terms of experience), if we begin to speak about our experiences, chances are that other will people come out of the woodwork and the load will be lightened."
To finish off on a more productive note, here are - in no particular order - some lessons learned and adjustments made from the ground level of chronic illness:
I need to be aware of my body but not fixated on it. Awareness helps me to take care, fixation connects my happiness to my health (kryptonite to the chronically-ill hustler) and demands attention that would be better spent somewhere else.
Just show up. Some events are going to be harder to attend, some moments more difficult to live, but life is so worth showing up for.
Put systems in place to make it easy to take care of yourself. Almost every Monday morning I make a run to gather fruits, nuts, and eggs -- food that will not inflame my ache situation. With my food needs taken care of, no extra energy or thought is spent on food, and I am not tempted to eat unhealthily for the sake of convenience. The one shopping trip on Monday makes it easy to take care of myself for the next six days.
Self-compassion is necessary, but self pity is paralyzing. Self pity says, ‘Yet another item on the long list of things I can’t do.’ It offers no solutions, and only stagnates any motion, creative or otherwise. It looks only at others’ advantages and puts my disadvantages under a microscope. Self-compassion helps me stay in my lane as she says, ‘I can’t do that right now, but that’s okay. I’m going to take care of myself and focus on what I can do right now, so that maybe I can do that thing later.’
It is not my job to be strong or well all the time: my lifelong task is to walk out my calling as best I can, and to love the people around me well.
We want to thank Megan for sharing her story with us. If you would like to share your story, click here.
Megan Dohm is a freelance writer and photographer from Raleigh, North Carolina. She is an over-analyzer, a book lover, and a museum wanderer. She is passionate about helping people find beauty in the midst of reality's thistles and thorns, and can usually be found curled up a sofa, working on too many pending projects.