Breath & Shadow
A Journal of Disability Culture and Literature
Breath and Shadow
Volume 12 Issue 1
The Alphabetical Prescription for Living with a Chronic Medical Condition
By Wendy Kennar
During college I worked in a public library. The first five years of my teaching career were spent teaching kindergarten. In both instances, the alphabet was a large part of each of my days. As a result, I now tend to look at the world and want to alphabetize it.
Living with an autoimmune disease is unpredictable and uncontrollable in many respects. Yet, I am a person who strives for order. So, I have written the A to Z Prescription for living with, and coping with, a chronic medical condition.
A. Acknowledge that your disease won't go away. You don't recover from an autoimmune disease like you do from a cold.
B. Buy yourself a treat, do something you enjoy. After doctors' appointments, it helps to have something to look forward to, whether it be a hot fudge sundae or time to read.
C. Connect with others. You may find it helpful to reach out to others who are experiencing a similar ailment. It's incredibly comforting knowing others understand exactly what you mean when you say, "My body just feels so heavy."
D. Don't ask, "Why me?" There is no answer, no logical explanation why.
E. Embrace your scars. Or at least make peace with them. You might find them unsightly, but really they are a sign that you're still here; you're surviving.
F. Family and friends. You need them, more than ever. Don't shut them out of this medical journey you're on. They know you better than anyone else.
G. Guilt. Rationally, you know that none of this is your fault. But most likely, you will feel guilty about what you're no longer capable of doing. Focus instead on what you're still able to do. And do it.
H. Help. Ask for it, and take it whenever it is offered. I'm still working on this one. I'm fiercely stubborn and don't want to admit when I can't do something.
I. Internet. The internet can be a valuable resource. But, be careful about the sites you spend time on. You want facts and medical evidence, not opinions and speculations.
J. Jargon. Make sure you understand the jargon your doctor is using. Ask for clarification if need be.
K. Keep an open mind. Look into alternative methods, such as acupuncture, changes in diet and exercise, and massage. Do what works for you to help ease your discomfort.
L. Laugh. There will be plenty of moments when nothing seems funny, so seek out the funny. My favorites involve Sandra Bullock; one scene in “Miss Congeniality” as she falls during the Miss USA Pageant and the other in “All About Steve” as she falls into a giant hole.
M. Music. Songs can be therapeutic, giving you the extra oomph to get going, a soothing hug, or a fond memory.
N. Nausea, weight gain, night sweats. Depending on your medication, you may experience some (or all) of these side effects. You and your doctor need to determine if the side effects are worth it; if the medication is helping your symptoms.
O. Obscure. Many autoimmune diseases are rather obscure; your friends and family may not be familiar with the name of your disease. They won't know what to say, they may not know how to respond to your news. It's not their fault. Educate them.
P. Pills. You may soon find yourself making decisions throughout your day based on the pills you need to take: Some on an empty stomach, some on a full stomach, some first thing in the morning, some right before bed. It's a fact of your new life.
Q. Question. Ask your doctor questions. Why is a certain medication being prescribed? What is its purpose? What other options are available?
R. Restyle, redesign, and/or resize what you need to. Your life and your body changes. The steroid I was taking resulted in a weight gain that meant that the rings I wear on eight of my ten fingers, no longer fit. It was a considerable expense, but I eventually had all my rings re-sized.
S. Stop doing things you don't want to do. Certain tasks are non-negotiable (urine samples, blood work). If there's something you don't like doing (cleaning the toilet, laundry), try to find someone to do it for you, even if you have to pay for the service.
T. Thankfulness. As bad as it gets, usually there is something that could be worse. Some days it may be harder to find the good, but all the more reason to seek it out.
U. Unwind. You will need to find a way to unwind, to rest your mind and body. Whether it's a nap or escaping through a book or movie, do it.
V. Variable. Autoimmune diseases are unpredictable. The way you're feeling from one hour to another may change quickly.
W. Weep. It's okay to cry and let it out: Cry because you're sad, cry because you're frustrated, cry because you're hurting. No point in keeping it in.
X. X-rays. CT scans, MRIs, Ultrasounds. You will soon become familiar with the many technologically advanced ways doctors have of looking inside your body.
Y. Yell and scream. Get it out. It's not fair, you don't deserve this, and you can be angry about it. But don't stay in this place. You need to move beyond this, because yelling and screaming won't change the facts.
Z. Zero. The amount of times you are allowed to think you did anything to deserve this. Whatever mistakes, whatever regrets you may have, they do not mean you deserve to be ill.
Wendy Kennar is a mother and freelance writer living in Los Angeles. She left her teaching career after twelve years, under the direction of her doctor. She is learning to live with the unpredictability of an autoimmune disease. Her writing has appeared in several publications and anthologies, including: the Los Angeles Times, Christian Science Monitor, United Teacher, L.A. Parent, Lessons from My Parents, and Write for Light. She is a frequent contributor at MomsLA.com and writes a weekly blog at wendykennar.blogspot.com.