My Chronic Illness Manifesto for 2016


For the past several years, chronic illness has kept me on the couch during New Year’s celebrations. This year, I hoped for a different picture: spending the holiday at a cabin in the woods with my wonderful, patient boyfriend (of almost a year!) and our close friends. Instead, I will be on the couch again.

Due to my ongoing struggles with kidney disease and POTS (postural orthostatic tachycardia syndrome), I am dizzy and swollen as I write this article. I’m disappointed. I’m a little angry. I’m uncertain about how this year will look, how I will get past this illness flare, how my boyfriend will respond when he learns that — once again — I must say “no” to one of our beloved adventures.

For these reasons, I’m feeling the need to remind myself of what I’ve learned through painstaking doctor visits, midnight reflection when I’m up with a blood pressure spike and more nights in than I can count.

In fact, I’m feeling so radical about the following ideas that I’ve decided to write them in manifesto form and share them with fellow Mighty readers in hopes that we will all remember our own intrinsic worth in the coming year.

In 2016, I’m willing to be bold about my own human value. No matter that I’ll be ringing in the new year at home, on the couch, not kissing my favorite person.

1. Dignity

The most basic yet most profound idea I learned this year (thanks, grad school!) is that recognizing human dignity can transform people’s thoughts, actions and interactions.

As a chronically ill person, I can recall many occasions when I felt my sense of dignity slipping away: physical exposure during medical procedures, obvious social difference, even people’s vocal outrage when I, at 25, parked in a handicapped space. However, I’ve learned my sense of dignity is not the same as the universal, equal dignity I share with all people alive. When I think of myself in that way, as a human being with dignity, value and legitimate needs, I am best able to treat myself well.

This year, I urge you to marinate in the idea that you are valuable on the basis of your humanity. No chronic illness, or loss of function or day in bed can change that.

2. Forgiveness

Let me be blunt — there is so much I wish I had done differently during 2015. I wish I had not pleaded so loudly for blood pressure meds in the ER on Thanksgiving. I wish I had stuck to my exercise program after moving to grad school (if I had, my POTS would be better). I wish I had been kinder to my family. I wish life was different.

OK. That’s all true. But I am letting that go.

I can’t change what has happened, and I am not so naive as to think I can change my behavior immediately after the ball drops. What can I do? I can breathe, remind myself of who I am (a human with dignity), view myself with compassion and move on.

3. Inner Life

Maya Angelou, who died two years ago only 30 minutes from where I live, gave the following advice to her son about cultivating an inner life:

“There is a place in you that you must keep inviolate, you must keep it pristine, clean, so that nobody has the right to curse you or treat you badly: nobody, no mother, no father, no wife, no husband, nobody — because that may be the place you go to when you meet god.”

As a creative person with chronic illness, I often lament that my health problems interfere with my memory and ability to make quality art, music and writing. For this reason, I cling to Ms. Angelou’s belief that maintaining an inward sense of dignity can help with social life and finding inspiration.

4. Choice

Ever since my diagnoses, I’ve wondered how other chronically ill people find the strength to endure their own pain and limitation. (For myself, as my family can tell you, I talk/complain/write a lot.)

After the first year or so of hospitalizations, nausea, pain, etc., I became allergic to the notion that I had to bear my suffering silently. What it took me longer to learn, though, is that I have a choice, at every second, about how to view and vocalize my experiences.

This year, I set the intention to hone in on each opportunity for positive choice. I want to choose connection, solidarity and giving others a chance above isolation, self-pity and skepticism.

5. Straightforwardness

I’ll keep this one brief.

As much as I pride myself on being an independent thinker, my mom is always right about one thing — don’t apologize for being sick and after that do your best.

6. Attention

One of the great assets of a life with chronic illness is time. While I’m not thrilled about the amount of time I spend in home or hospital beds, I do place high value on my opportunity to develop the skill of attention.

In 2016, I want to develop more openness to the people I love, as well as sensitivity to even the tiniest beauties in my limited world.

7. Freedom

Here’s the final, and most important, idea I intend to prioritize going into 2016.

It’s that, regardless of my chronic illness, I am free to choose the best life possible under the circumstances. I am free to live with dignity, if I let myself.

And so are you.

JOIN THE CONVERSATION

Related to Postural Orthostatic Tachycardia Syndrome

To My Friends Who Don’t Understand How Illness Affects My Social Life

Dear friends and loved ones of those with chronic illness, I’ve been struggling with chronic illness for about three years now. I had health problems before, but three years ago they began to take over my life. Ever since then, I’ve been on a slight but steady decline. I used to go out with friends [...]

To the Doctors Who Told Me My Physical Problems Were Psychological

My health took a bad turn last October. The biggest issue was syncope, or passing out. It came literally out of nowhere. It was scary for myself and those who loved me. We wanted answers. And naturally when you’re sick and want answers, you look to doctors. Little did I know finding a doctor who would [...]
young woman with 'get well soon' balloon and teddy bear

What I Wish Parents of Children With Chronic Illness Understood

Dear parents of children with chronic illness, I understand the confusion. I see how impossible it is for you to continue on knowing your baby girl or boy is in pain in some way that no one seems to be able to solve. I understand the struggle of not understanding what’s happening. The want for [...]

When a Stranger Implied Using My Cane Was a Choice

“I’m disabled. I would use a cane, but I refuse to,” said the employee at our grocery store. I stared back at the woman for a few moments, glancing at my own cane, then at her. My mom stood beside me. We were only trying to check out at the grocery store when an employee [...]