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6 Ways I See the Bright Side of My Son's Chronic Illness

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Earlier this year, my 11-year-old son, Michael, was diagnosed with Ehlers-Danlos syndrome hypermobility type (EDS). The diagnosis didn’t come as a surprise; in just over a decade of life, he’s experienced sprained wrists, ankles, fingers, a torn meniscus and ACL and a variety of other symptoms that led us to a geneticist for investigation.

Is EDS something I wish Michael didn’t have? Of course. As a parent, I don’t want to see him in pain, missing his beloved sports or spending time in doctors’ waiting rooms.

At 11 years old, Michael has already had half a dozen MRIs, two surgeries, countless X-rays and a hospital stay. He’s been a patient of a variety of medical specialists. But as is my tendency with most other aspects of life, I choose to look for the bright side when I can. EDS is something that’s going to follow him through the rest of his life, so I hope Michael can take my lead and focus on the positive aspects of his diagnosis.

Here are six ways I see the bright side of my son’s chronic illness:

1. There’s always a good topic for an essay or speech.

Michael is in sixth grade; he still has a lot of years of school ahead of him. And while he doesn’t often like to talk to his peers about EDS, this will probably change as he gets older. And when he’s called on to write about himself of give a speech about an experience, he shouldn’t have to dig too far. And essays for college applications? Done.

2. We appreciate the good days.

These days, we sometimes joke and say that Michael is “between injuries.” Thankfully, the doctors still encourage him to play sports (although we’ve made some decisions together about what sports aren’t wise for him to participate in). And when his body is working well and he’s injury-free, the happiness on his face when he’s able to run around and play is overwhelming.

3. He has a perspective on youth sports usually reserved for adults.

Because Michael has spent a total of nearly two years being sidelined from sports, he just wants to play. While his true love has always been basketball and he’d love to play on a great team and win, he has the perspective that just being in the game is what’s important. Would he rather pitch for his baseball team than play in the outfield? Sure. But he’s lived the alternative, so when it’s his turn to be in the outfield, he gives it his all.

4. We’ve met some amazing people on this journey.

From the doctors and nurses who have cared for Michael, to the coaches who encouraged him while he spent seasons on the bench, and the teachers who have helped him through missed school days and months on crutches, we’ve been incredibly lucky to cross paths with people who have shown us the good in the world.

5. He’s learned to be compassionate.

Michael sees that, as we say in our house, “everyone has something.” When Michael isn’t wearing a brace or splint, nobody can see his pain. They don’t know that the start of a new season of sports can easily bring overuse injuries. They don’t know that a lot of walking causes his knees to ache. And that what would be a normal level of activity for another child his age can result in painful muscle spasms. Because Michael knows that people don’t always know what he’s going through, he’s become sensitive to the struggles of others.

6. We’ve learned how to problem-solve.

As a family, we’ve worked together to find ways to help Michael get through more difficult days. We can usually figure out if something needs to be seen by a doctor or if we can deal with it ourselves. I’ve learned how to ease pain with heat, ice and massage. My husband has helped Michael understand that being on a team is about more than just playing the sport, so when he’s injured, he supports his teammates at practices and games. And Michael’s older brother does his best to distract Michael with goofy humor when things aren’t looking so good.

Every day, I hope that Michael stays injury-free, and I resist the urge to send him out in the world protected in bubble wrap. We do our best to maintain our sense of humor, look for the silver lining and continue to stay strong together.

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Originally published: November 9, 2016
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