Reflections

The things no one tells you when you are diagnosed with a painful chronic illness…

Chronic illness leaves you feeling like you’re letting everyone down—especially yourself. It’s a constant game of adjusting expectations, rethinking assumptions, and regulating hopes. That deadline you’re trying to meet, that show you really wanted to go to, the pile of dishes in your sink, your friends who you want to see… all of these priorities become subject to the fickleness of your health.

Pain is a constant companion, and days when it’s a 3 out of 10 are a triumph. You don’t remember the last time you didn’t wake up in the night, unable to find a comfortable sleeping position, but you think it may be close to a year ago now. Some days, basic bodily maneuvers—walking, sitting in a chair, typing on your computer—seem nearly impossible.

You thought you knew what it meant to be tired. You didn’t. Fatigue is something else. It consumes everything. Concentration is impossible. Words escape you mid-sentence. Many days are a fight to stay alert. Some days, the only thing you can do is accept that you can’t push yourself further and lie down.

All of a sudden, you have more people on your medical team than you can count. Your rheumatologist, physiotherapist and pharmacist become the frontline. Your family doctor, massage therapist, chiropractor, and psychotherapist are there in the background. You have a standing appointment every two weeks at the lab for blood work to ensure that your many medications are not damaging your liver or kidneys, or causing blood disorders. Your dietician provides helpful advice and guidance as you adjust. Regular attendance at the gym becomes part of your treatment plan.

You feel like being sick is all you are able to think about, and all you ever talk about. The irony is, most of the time, you’d just like to forget it exists. You feel like you spend all of your time explaining your health to people—to doctors, family members, friends, colleagues, supervisors… You worry that you are alienating people with your constant ruminating. You might be. You finally meet someone with the same condition and you are so relieved when they just look at you knowingly when you allude to some vague symptom. For a moment, you feel less alone.

Some days, you remember that this is forever. That there is no “getting better.” You will simply have to get better at dealing with it because this disease is with you for the rest of your life—through good and bad, thick and thin.

Anyone who meets you now won’t know who you were before you were sick. You’re not even sure who that person was, or when “before” was. Was it before that first time, in high school, when you woke up unable to move your hip? You went to the emergency room then. They took x-rays then and found nothing—sent you home with a prescription for Tylenol 3s and a set of crutches. Was it before that time five years ago when you woke up completely unable to move your right leg? Months of physiotherapy and acupuncture helped, but you were never back to 100% after that. Was there a before, is there an after, or is it just one long now?

Most days, you take this diagnosis in stride. We all have our challenges—and this is yours.

Most days, you are able to find the silver lining.

Most days, you are grateful for the things that you have learned about yourself and about your support network. You are grateful for a job you love with coworkers who really try to get it, friends who go above and beyond on a regular basis, family who loves you… You are grateful for universal healthcare and advances in medicine… You are grateful for good days, for sunshine, and for a nice after work nap… You are grateful for heating pads and comfortable shoes… You are grateful for life itself, even if it is a life marked by chronic disease—by invisible disability.

And with this, your story of life with A.S. has begun…

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