Start by simply accepting, understanding

By PAUL HILE

I have these moments, occasionally, while cooking, or cleaning, or even while at work, when I feel young—very young. I think about my wife and I moving throughout our cramped apartment in Atlanta and I wonder where the adults have happened to. Inevitably, I realize we are the adults; we’re paying the rent. We’re fixing the leaks and cleaning up the spills.

Like I said, though, that only happens occasionally. The rest of the time my wife and I feel much older than we actually are (we are both 23). We certainly aren’t your standard issue 20-somethings. My wife Grace was diagnosed with a rare autoimmune disease when she was 19, only a few months after we had begun to date, and it changed everything.

We didn’t have the “typical” college experience. While our peers participated in events, groups, teams and activities, my wife and I were bouncing between doctor’s appointments, struggling to make and maintain friendships, and going to bed early, because when you live with muscle pain, anytime you’re not moving is a blessed gift.

In college, while many of my close friends played intramural sports, video games, or socialized at parties and bars, I spent the majority of my spare time with Grace, helping her get to and from class, consoling her during particularly difficult days, and, in some cases, fulfilling responsibilities you’d expect caretakers to do with elder loved ones, not with your 20-year-old girlfriend.

Young Caregivers: Start by Accepting What We Face

How can you help the millions of young caregivers—and their young loved ones coping with health challenges that often are difficult to understand? Start by accepting that our lives are a bit different.

This may shock you, but Grace had to cope with professors who didn’t believe she was sick. Once in a biology course that held lab hours outdoors, a professor took the entire class up a notoriously steep sand dune in West Michigan. He actually said to her: “It’ll get easier when you get to the top.” Then, adding injury to his insult, he began to give his lecture while Grace was only halfway up the hill. Of course, he didn’t know that afternoon inevitably caused her to relapse. But he never believed she was sick in the first place, and he’s not the only one.

Now, as we’ve come to make a new city our home, we find ourselves face-to-face with realities similar to the medications Grace has to take: pills, hard to swallow, causing unnecessary and painful reactions. This is only our first stop in life. Our first city.

Young Caregivers: Understand That We Need to Adapt

We don’t need pity, or to be told what to do. We enjoy life, professional challenges, good friends. There is more to come in our lives as we pursue higher education and careers. We will make the world a better place—but we need to adapt along the way. What can you do? Simply understand and adapt with young friends in our situation.

Here are the questions we wrestle with: How do you explain to new friends that your life revolves around a disease that they’ve never heard of—nor that they can see? How do you cancel plans last minute because your spouse is feeling especially tired, without upsetting your new friends or using the illness as an excuse or crutch? How do you explain to your employer that you might need to take more days off than other employees, not because you’re lazy, or irresponsible, but because you have doctor’s appointments, and treatments, and days when you’re simply too tired or weak to get up and get going?

These are questions that we often have to navigate with no rulebook or guidelines. We certainly don’t have the answers, nor do we claim to get it right the first, second, or third time around. Often, we have to pray that people will understand, accept and adapt with us.

Young Caregivers: Why should you care?

We’re not alone.

We are millions. Estimates of the numbers of caregivers vary widely, but major studies all agree there are more than 50 million of us nationwide. Within that huge number, 1 in 5 of us are aged 18 to 34, according to a study from the National Alliance for Caregiving. So, there are millions of 20-something caregivers; and, while Grace’s disorder is rare, there are millions of men and women like her facing tough, chronic challenges in their 20s.

These are challenges that define these us—that mature us far beyond our years, for better or for worse.

Our priorities are different than others our age, and even those in their 30’s, 40’s, and 50’s. Ask Grace what the most important thing is to her and without hesitation, she’ll say it’s her health. Ask me what I worry about day-in and day-out, and it’ll always be health care. Will we be able to afford the healthcare she needs to receive her next round of infusions, which, last we heard, cost upwards of $18,000 (that’s about $20,000 less than the original estimate)? We could care less about new cars, or nice things so long as we are healthy and well. We’ve learned very quickly that without our health, nothing—and I mean nothing—matters.

I was asked to write this article about what Grace and I wish people knew about caregiving among young adults. The truth is, it’s not that different than caregiving for an elderly family member or friend. It’s hard, and taxing, and tests us in ways we never expected. What can you do? It’s pretty basic, yet often ignored: We need people to listen to us and support us without judgment or exception. We need people to know that our priorities are different and always will be. We will have to cancel plans. We will have early bed times. We will have dietary restrictions that make community meals difficult.

Some folks will be able to understand that and others wont. We’ll do our best to accept that, if you do the same.

Paul and Grace live in Atlanta, Ga. Paul is a writer and coffee professional and Grace is a biochemist. They will be moving in the fall as Grace pursues a medical degree. Despite still undergoing treatment, they are pleased to share that Grace’s health is currently the best it has been since her original diagnosis.

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