When I was a kid, having a support team for my disease meant having a parent who would fight my doctors for the “unnecessary” x-ray, the “it won’t make a difference” blood test, and the walk-in, 5:59 PM doctor’s appointment.

But as an adult with a rare disease, my world is much different.

No longer do I need someone to hold my hand when I get an IV or fight on my behalf when I demand a new treatment plan. Thanks to my support team as a kid, I learned how to be an advocate for my own health (even if my supportive mother still fights alongside me!).

Instead of needing a champion for my health, what I needed was a bridge of understanding between me, my disease and my education, my relationships, responsibilities and career. And I could never have gathered the support I need to live a normal life with a rare disease—if not for the village of people who helped to raise me in this strange and hypo-allergenic world.

As a rare kid-turned-adult, I can give you my two cents on what you should try to teach the “rare” child so they can function as an adult:

1)      You’re Responsible for Your Reactions: You wouldn’t blame a hemophiliac if he wouldn’t stop bleeding, and you wouldn’t scold a child with CVID for not responding to antibiotics. But the idea that your rare-diseased child needs to take no responsibility for his health is a myth. Coming to terms with your disease is something that takes many years of experience, trial and error. But once you do come to terms, you start to realize that you DO have control over some aspects of your disease.

Taking responsibility for keeping track of their medical history, remembering what allergies to medication they have, staying the course on their treatments, and taking care of their health as far as eating right for their disease, exercising in any capacity that is medically approved, not over-doing it when they’re already having a bad day—even though they may not always feel like it—are choices every rare child-turned-adult will have to learn to make in their everyday lives and learning to respond to the tumultuous ups and downs of their condition will help them cope far better than many healthy adults in the future.

2) Have a Plan (For school and beyond!): Hope for the best, but plan for the worst. You can teach your child first-hand about planning for the mishaps and mayhem of illness by organizing their education around the possibility of flare-ups. Working with your child’s school to set up a disability plan, investigate homeschooling options, and take-home work in case of a hospitalization or leave of absence, provides a sense of comfort for everyone. It also gives your child an understanding of how to start planning their lives around their disease. Rare might interfere with life on a daily basis, but it doesn’t have to crush dreams or destroy a sense of normalcy. Always have a plan for how you’re going to continue life normally, despite whatever comes your way.

By high school, your child should be heavily involved in their own educational plans—they can do this by sitting in on meetings, having one-on-one talks with their teachers and working with classmates who can fill them in on missed work. Handling these situations better prepares them for how they’re going to handle work, life and family with a rare disease.

3) Cry About It, Hydrate, and Move On: Sometimes treatments will make you sick, needles will hurt, tests will be scary. Sometimes doctors will give you bad news, kids will make fun of how you’re different and people who you thought would support you don’t end up being all that supportive in the end. It’s okay to cry about it, to let your child scream or sob or react naturally to their fear, anger, sadness or frustration. When they’re sick, they need to rest and heal. After all is said and done, life with a rare disease can really suck.

Yeah, I said it. And you’ll say it too when you see your child struggle and get the rug pulled out from underneath them again and again—but you’ll still have to be the one to pick them back up, bandage their knees and tell them to get back to living—because it’s not over yet. Moving on after a bad episode, hospital stay, or long period of illness isn’t always easy—but with enough practice, it will become the natural reflex and will give the rare kid hope that life does continue after their disease strikes once again.

4) Life is Funny: Of all the landmines the world could have thrown at your feet—it picked rare disease? Did it run out of losing-the-lotteries and job-transfers-to-Siberia? Learning to laugh about the completely haphazard way you must feel about the way your life was pieced together after a rare diagnosis, is an art form all its own. Flirting with nurses as you get an IV, coming up with a thousand synonyms for “clueless” in the car ride on the way home from that new specialist and finding the best way to light on fire that prescription that caused the worst migraine in history are all just a scene in the greatest show on earth: the life you still get to live every day. Laugh and the world laughs with you—and as it turns out—it also takes the pain from you.

About the Author

Ilana Jacqueline is the Managing Editor of the Blog at The Global Genes Project. She’s a Postural Orthostastic Tachycardia Syndrome and Primary Immunodeficiency patient from South Florida. You can read more from her on her daily blog, www.letsfeelbetter.com.

2 thoughts on “Teaching a Child with Rare Disease to Cope: Tips for Parents from a Rare-Kid-Turned-Adult”

  1. Angie says:

    I wasn’t a rare kid but I’m trying to see if I can get enough diseases that just go by initials that I can win a Guinness World Record or something, because I already have WAY more rare initials than even any of my specialists. I found this through a friend that I share a couple of those fun initials with that beats me hands down in the initials race, darn the luck!!, and she was a rare kid and she is now a rare and very special hound woman about to finish her first year of college. On her word I had to come read your article, which I think a lot of applies to some adults, if they were hit with a rare and serious disease after 20 or 30 years of perfect health. They will need someone, whether a parent, a spouse or even just a friend, help them through the turbulent waters they’ve just been dumped into. Thank you for writing this. I plan to share it with a group of rare parents that I think will appreciate it.

  2. I can relate as an Adult with a Rare Disease. I have little to no supports and the medical system – makes fun of those they dont understand and just want to study us like lab rats. I am human, I am the same as anyone else out there – just with a body that is badly wired. I cope day to day and share very little of my experiences due the judgements and perceptions of others. Love, Compassion and understanding is what we need. I dont do Sympathy – things are what they are and you just do the best you can with what you have. I hope one day to HEAL from this disease #pkulife

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