Young Caregivers: What We Wish You Knew …

Start by simply accepting, understanding

By PAUL HILE

Grace and Paul Hile

Grace and 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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Comments

  1. Your story helps us understand the need for acceptance and support, for everyone, as everyone is undergoing some situation that is stressful and challenging. Our Sunday school class is studying the book of Job. The question was Why? Why did this happen? Why do bad things happen to good people? He had some “friends” who came to comfort, but instead, offered judgment. Some human suffering defies our attempts to explain it.

    Your story is encouraging as we are better able to cope with our everyday challenges, when we put in perspective our occasional issues, as compared to your daily challenges.

    We pray that God will give you His peace. Jim

  2. I can totally relate. My sister was diagnosed with Multiple Sclerosis at 23, and we have gone through all of this. People would tell me she “doesn’t look sick” and be critical if she could show up for things. She lost friends who thought she was “milking” her illness. She’s now 47 and even when we search for places for her to live and get assistance, we find they are all for seniors. It’s an every day challenge, and you wife is so lucky to have you, and your wonderful support! That is true love!

    • Marsha,

      Thank you for your kind, warm words. And for sharing a bit of your sister’s experience with MS. Our hearts ache to hear what people said; she is not alone, sadly. We are all connected, and everyone has their own challenges. Hopefully, one day we can all learn to listen and work to understand.

      With Gratitude,

      Paul & Grace

  3. Paul, your account of Grace’s illness reminds me of Laura Hillenbrand’s struggles with CFS, which also began when she was an undergrad. (She’s the author of Seabiscuit and Unbroken.) I remember reading her backstory & thinking that her partner must be one very extraordinary gent. As are you! Good luck & many blessings to you both.

    • Thank you, Mary, for your warm and kind words. I suspect you’re giving me more credit than I deserve. I am just lucky to have found such a wonderful partner in this life as Grace!

      Hope you are well!

      Grace & Peace

      Paul

  4. Dear Paul,
    I’m so glad you are writing about your life and what you both are dealing with. This will help many and the more open you are, the more grateful those who share their life with you will be. I had a serious disease in college and ran into the same cluelessness from a professor. She didn’t believe I had a serious disease–I couldn’t walk up the stairs to her office. I had to drop out at one point and get a tutor. She was a nightmare but I guess she taught me how to speak up! What a beautiful essay. Thank you.

    • Oh, Jessica. I simply cannot thank you enough! You are all too kind to me.

      I have read about your illness and treatment and shared it with Grace and we are absolutely in awe of your strength, compassion and love for life. Thank you for sharing your story; so many people find such strength in your words about your struggles, including us.

      Grace & Peace

      Paul

  5. Benjamin Pratt says:

    Dear Paul and Grace,
    Thank you for sharing this beautiful testament of love, compassion and valuable advice for others your age and for all of us regardless of age. You have claimed the value and necessity of non-judgemental listening and the value of accepting our own limitations as well as gifts. You have blessed all of us caregivers. Thank you for modeling the rich bounty of love and committed devotion that obviously sustains your marriage.
    Holding you in the Light,
    Benjamin

    • Benjamin-

      Thank you, thank you, thank you! I cannot say it enough. Your support is wonderful, and your warmth and kindess are palpable. We are so fortunate to have your support.

      Grace & Peace

      Paul

  6. Dear Paul,
    How fortunate Grace is to have you by her side.
    No doubt that the good state of her health is in no small part due to
    your loving care and advocacy. Wishing you both all the best as you
    move forward.

    • Debra,

      How fortunate I am to have Grace by my side! She has given me so much love, and I have learned so much from her. Her strength is admirable.

      Thank you for your wonderful note and your support. Blessings to you.

      Shalom,

      Paul

  7. Paul & Grace,
    Thank you for sharing your story so that other may learn about caregiving as a young adult. Your journey has provide you both with unique experiences and awareness of what truly is important in life.

    • Tania,

      That is has, that is has. When the rubble has been cleared away, Grace and I often discuss that which we’ve learned from our journey: lessons, I suspect, we’ve learned the hard way, but are good in the end. Grace, too, has learned so much about what type of doctor she hopes to be in the future. There is light in the dark.

      Blessings,

      Paul

  8. Thanks for sharing your perspective, Paul. People need to hear about the reality behind the scenes. I’m the mother of a 28 year old who became quadriplegic when she was 15. I often get the feeling that I’m just about the only person who truly grasps how much caregiving her husband does. Even he doesn’t seem to think all that he does is a big deal. Yes, she has home care who get her up in the morning, put her to bed, and do her showers. The rest, though, is up to the two of them to figure out. I find both of them amazing. They run a business together, they have an active social life, and they’re a great, fun-loving couple. I’m glad her Dad and I are nearby and can help out some.

    May your message ring out loud and clear: Don’t judge when you haven’t walked in someone else’s shoes!

    God bless
    Bobbi

    • Oh, Bobbi, your daughter sounds like such a strong, strong woman. And her husband, too. What strong and wonderful and loving people. And oh how big their hearts must be!

      I know they are entirely thankful for you and your love and your support, as Grace and I are of our folks. It means the world, really! Without our parents, we’d certainly not be where we are today.

      Thank you for your support and for sharing your story. We are all in this world together, aren’t we? And we all have struggles and challenges we face. May we love without limitation and live without judgement.

      Grace & Peace,

      Paul

  9. Christine Nixon says:

    Dear Paul,
    I will share this with my dear husband, who is also my caregiver when he gets home from work.
    I have Dermatomyositis and Lung Fibrosis and apart from us being 30 years your senior , our struggles and triumphs are the same as yours and Laura’s.
    Thanks for sharing. I will share with my fellow Myositis friends on my Myositis Ramblers Facebook Group too.
    Empathy is all we need , not even sympathy.
    All the best to you and Grace. xx

  10. michelle says:

    Hi Paul and Grace,
    I get it. I have Polymyositis and feel for my husband and daughters. Our lives
    have changed dramatically. It is a struggle every day for me and for them.
    I will pray for you all. It’s sometimes a minute by minute day.

    Thank you for your article.

  11. Thank you so much for sharing your story. I have been dealing with various autoimmune disorders since I was in the eighth grade (including myositis and rheumatoid arthritis and others). I have dealt with friends and teachers who don’t believe I have problems and get angry when I cancel plans or miss school. I am doing much better now, and I am excited to be attending the University of Iowa next fall as a pre-medicine major. I hope that more people will be able to understand these types of illnesses every day, and understanding begins with people like you sharing their stories. I wish you both the best, and thanks again!

  12. Dear Paul…..thank you so much for writing this article. Our daughter was diagnosed with Juvenile Dermatomyositis when she was 2 1/2, she is now 18. You article hit the nail on the head. Good luck to both of you in all you do!!

  13. Thanks so much for writing this. As my teen daughter with juvenile dermatomyositis gets older, I worry about how she will adapt to life as an adult. This was great.

    Thanks for sharing!

  14. Your story is amazing seeing someonr else in the atlanta area… I’ve recently started a pret rry serious relationship and he’s learning about dermatomyositis slowly but is all about learning how to best care for menif I’m to ever relapse. God bless people like you

    • Tiffani,

      What a kind, kind note. Wishing you two a happy and *healthy* relationship. Dermatomyositis is most certainly a difficult thing to understand. We wish you the best!

      Paul

  15. Paul and Grace, I wanted to let you know about the Well Spouse@ Association, which offers peer support to husbands, wives or partners of someone with a chronic illness.

    I was a caregiver for 29 of the 31 years my wife and I were married, she developed a chronic illness 2 years into the marriage; and I was with her until she died. It can be a lonely life, but it helps a lot when you know others in that situation and can give support and share in bad moments and good!

    BTW, my wife’s illness and my spousal caregiving started when we were both 30, so we were young caregivers, who dealt with the “elephant in the room” – the illness – until we were both 59.

    Wishing you the best,
    Richard

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