4 Truths I've Learned About Life With Chronic Illness

I am 29, finishing up what was promised to be the most optimistic and vibrant decade of my life. Youth, beauty, energy and gravity are all supposedly aligned in my favor. And, for the most part, my life trajectory is on point. I have a good job, a smart, loving husband, a few pets, a house and great family and friends. The caveat: most of the time, I feel like crap.

When I was 24 I had surgery to remove a group of tumors from my bladder. Since then I have struggled with an autoimmune disease that wreaks havoc on my urinary tract and surrounding tissue. The disease is not widely understood in the medical community and therefore is not easily treatable. Which, considering our access to information and healthcare, is astonishing. In my metropolitan, midwest community alone, there is a nationally ranked, top 20 healthcare system, a state-of-the-art children’s hospital, two medical research facilities, and three different universities that provide mid-level and doctoral medical programs. Healthcare employs more people in my county than any other industry. Yet somehow, with all those resources, my treatment options are limited.

I am not alone. Millions of Americans struggle with illnesses that are either untreatable or debilitating even with treatment. Cancers, autoimmune diseases, organ failures, and food allergies pervade society without discrimination to age, race, gender or social status. So as one of these millions of Americans whose life is a marathon of appointments, medications, specialized diets and a overall compromised quality of life, here is what I have learned:

1. You learn to cope.

When you wake up each day feeling less than stellar, your benchmark of “normal” changes significantly. So one does what humans do: adapt. I still do many things I did before getting sick. I get up each morning, get dressed in cute clothes, and (sometimes) do my hair and makeup. I work. I socialize. I volunteer. I go out. I have fun. But I also have made many “adaptations.” I set aside time for naps. I use different colored highlighters to note different doctor appointments. I use phone apps and calendar reminders to seamlessly keep my pharmacy list sorted and refilled. I ferociously adhere to a schedule and routine.

Because at the end of the day, coping is not curing.

If you refuse to let your sickness totally sideline your life, you learn to work around it. Many ill people cope so well, the rest of the world doesn’t even know they are sick — or, doesn’t believe them. So I reiterate…

2. Coping is not curing.

I may hide my fourth-day hair in a top knot, wear bright pink lip gloss and match my purse to my shoes, but that doesn’t mean my illness has disappeared. It simply means that today I fought hard to not let my illness leave me looking like a train wreck (fourth-day hair aside). But my effort is often misinterpreted. There is a lot of confusion and judgment: if I feel that bad consistently, I shouldn’t look half-decent. Additionally, when I do feel that sick, I must just be “whiny” or “dramatic,” as most of the time I look fine. It’s messed up that in order to be taken seriously or receive sympathy, I have to look half-dead.

Not everyone likes to wear their health conditions on their sleeve. The pain is real, whether the rest of the world sees it or not. The pink lip gloss mentioned earlier gave me a reason to smile today, making the fight worthwhile. That is why I wore it.

3. Build (and maintain) a strong support system.

Research says that lonely people are generally sicker and die younger than individuals with strong emotional ties. If you are already sick, don’t make it harder on yourself. Friends. Family. Neighbors. Find them. Embrace them. Love them. They will get you through things that are nearly unbearable.

And I can already hear the argument, “When you’re chronically ill it’s hard to maintain relationships.” Yup, it can be. But you have to for your health, both mental and physical.

Might I suggest a few easy places to start…

• Don’t overcommit yourself. If you find that you often bail on plans, don’t say yes to all the plans. Maybe only commit to one social thing a week, and make a point to muster enough energy to show up. (If you absolutely have to cancel, make it a priority reschedule.)
• The lovely text message: requires minimal time and energy, yet is a brilliant means of communication. I text with my four besties every week, without fail. We send memes, snippets of our day, cat pictures, etc. It doesn’t have to be deep and meaningful, it often just needs to be consistent.
• Embrace multitasking. I cannot tell you how many times I have, without shame, used a Costco run as an enticing social activity. Frozen yogurt, five-pound bags of quinoa and a shopping buddy – yes, please. Two birds, one spoon.
• Give time limits, in the most casual way possible. I get that going out for cocktails and dinner is often not feasible, so offer something less intense; “Hey, I’d love to see you! I have a window of time on Thursday afternoon to grab coffee. Are you free between 4 – 6 p.m.?”

Effort is the lifeblood of any relationship. Invest some of the time and energy you have into your relationships. They are worth their weight in gold.

4. Be honest, but guarded.

I noticed that while some people were genuinely interested in what was wrong with me, most people were quick to dismiss it. This caused me lot of angst. I felt really misunderstood.

As a result, I began talking about my disease like word vomit. I hoped if I explained it again and promoted awareness for it that I might provoke some sort of positive response from people. Sadly, what I found was talking about my illness too much actually made it worse. Some people thought they were suddenly doctors and had all the answers. Some people would compare it to some totally insignificant and not remotely similar experience they had. Others questioned every decision I made, eager to criticize my every move. Instead of educating people on my illness, I was defending myself, my choices and my healthcare. It was exhausting and frustrating.

Rather than continuing to engage in this aggravating process, I decided to break the cycle. I decided who to be honest with and who got a basic, “I’m fine, thanks for asking” answer. I took control of the flow of information and, in doing so, took control of my emotions.

Not everyone is going to give you sympathy. Not everyone is going to believe you. Accept this as fact. Once you do, you can use your best judgment to decide who is worth your vulnerability and who is not.

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