5 tips for helping teens with Fabry disease to thrive
Reflections after a mission trip with my 14-year-old daughter
In March, I was blessed to go on a mission with my 81-year-old mother, my 14-year-old daughter, Marisa, and two other moms and their girls. We arrived in the stunningly beautiful Costa Rica and spent a week in a small village nestled in the mountains, where we visited the homebound, the needy, and the elderly every day.
On the last day of our mission trip, we sat in the sunshine, surrounded by tropical grandeur, and took turns sharing what we were taking from our time there and what we were leaving behind.
Marisa, who lives with Fabry disease, shared that she was taking with her the love of the people and the joy that the missionaries had experienced. Then she said that she was leaving behind her complaining attitude. Marisa had been struck by witnessing the sick and disabled who, despite great poverty and suffering, welcomed us with cheerful dispositions and bore their difficulties with grace and even gratitude.
Since that week, Marisa has demonstrated greater gratitude and positivity. Therefore, as I begin to offer suggestions that might help a Fabry patient in the throes of their teens, serving others is at the top of the list.
1. Seek service opportunities.
American educator Booker T. Washington offered this wisdom: “If you want to lift yourself up, lift up someone else.” That might be an especially important truth for adolescents. The teen years are often typified by self-centered behavior, which makes teens vulnerable to depression. Hence, when Marisa was focusing on her own ailments and troubles, she wasn’t happy, but when she was intentional about lifting someone else’s heavy burdens, she found her own cross less weighty.
Just as Marisa found joy on our mission, teens who seek out opportunities to serve and uplift others tend to be happier. In fact, the good feelings (and endorphins) that come from being a gift to another are a powerful antidote to depression and anxiety.
2. Do something you love.
Marisa deals with frequent flare-ups of foot pain and gastrointestinal discomfort on top of the normal challenges of puberty, both physical and mental. At times she’s complained daily about life, school, her body, her extracurriculars, and her social connections. It’s heartbreaking to see my girl unhappy.
Recently, she’s been complaining less after joining a city volleyball league. Marisa loves volleyball, but the hot Texas weather often keeps her from practicing in the backyard. Now, with a new practice schedule, a new team, and fresh personal goals, her spark is back.
The chance to be active and do something she loves has made a marked difference in her outlook. The fun she’s having on the court doesn’t eliminate her neuropathy or abdominal pain — in fact, sometimes the symptoms are exacerbated — but volleyball gives her something to look forward to and a reason to push through the pain. We all need something enjoyable to draw our attention away from our problems.
3. Take your medication.
After bad experiences with treatment, Marisa became reluctant to get on any regimen. Even though her worsening symptoms are alarming, she has stubbornly avoided or simply forgotten to take her prescribed medicine.
As her mom, I finally had to come up with creative incentives so that she’d take the two prescriptions that could relieve some of her neuropathy and gastrointestinal pain. To make sure she adheres to her treatment, I hung a calendar on the wall where she must put a check mark after taking her meds, and she set a daily alarm on her phone.
For the first time ever, she’s been faithful to her regimen, and we’re seeing slightly fewer flare-ups and less discomfort.
4. Enjoy a pick-me-up.
Besides seeking activities that bring joy to others and themselves, I’ve found that a special splurge can go a long way in boosting a teen’s morale.
For Marisa’s Confirmation day, I was inspired to get her hair cut somewhere other than Supercuts. Normally, the luxurious Ritz-Carlton Spa is out of our budget, but for this occasion she was pampered beautifully, and the smile on her face was worth it. The special treatment she received was just what the doctor ordered for my sweet, wearied teen.
5. Write it out.
Everyone needs a safe place to vent or lament, but not everyone wants to talk about their troubles. For my introverted daughter, I’ve discovered that journaling is a healthy outlet for her to process and organize her thoughts.
A cute, cheap, leather-bound journal from Amazon has opened up hours of fun for Marisa, who enjoys working through things in writing while still keeping her thoughts private.
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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