Caring for a child who has X-linked hypophosphatemia (XLH) can be draining. You’re dealing with a rare disease characterized by weakened bones and teeth, possible fractures and dental abscesses, muscle weakness and pain. Having to constantly try to explain what you’re going through to friends and associates can cause additional stress.
Perhaps the spoon theory can help you cope.
What is the spoon theory?
As the theory goes, each day begins with a dozen spoons. You have to give up one spoon for each task you perform: brushing your teeth, dressing, visiting the doctor, making dinner, etc. When there are no more spoons left, that’s it.
Healthy people, or those not caring for a child with XLH or another chronic illness, have all the energy necessary to do whatever they need to do on a given day. They, unlike you, seem to have a limitless spoon supply.
The spoon theory emphasizes that those with a chronic disease — as well as their caregivers — have a finite amount of energy that must be carefully spent. Choosing to perform any one errand or task limits what you can do for the rest of your day.
How does the spoon theory apply to XLH?
XLH is a progressive genetic disorder that affects bones, muscles, and teeth due to excessive loss of phosphate. With its myriad symptoms, XLH can pose many challenges for patients, which can overtax you as the caregiver.
Putting the spoon theory to work
Understanding that you have only so much energy makes daily prioritizing and planning crucial. Be compassionate with yourself if you don’t complete everything you set out to do. When you’ve used all your energy, your day is over.
It’s also important to not feel that all of your energy must go toward caring for others. It’s vital that you also practice self-care. If part of that means “using a spoon” for, say, taking a brisk walk alongside a lake or in park, then so be it. Taking care of your own emotional and physical health is essential for the wellbeing that’s necessary to caring for someone else.
When you’ve exhausted your spoon set, don’t hesitate to ask for help. After all, once you’ve explained the spoon theory, your friends will better understand your needs.
Tips for stress management
Here are suggestions for additional ways to handle the mental challenges of caring for someone with XLH:
- Contact the nonprofit XLH Network, which supports caregivers as well as patients.
- Maintain connections with family and friends; don’t isolate yourself.
- Exercise. Every little bit of physical activity can help to lower stress levels.
- Limit your alcohol, nicotine, and caffeine intake. These substances can increase stress. Reducing them can help with relaxation.
Last updated: June 5, 2020
XLH News Today 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 providers 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.
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