Tips for Staying Motivated with a Chronic Disease Like XLH

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by Mary Chapman |

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Crysvita, EU

When you’re living with a rare and progressive disorder like X-linked hypophosphatemia (XLH), with its myriad of potential symptoms, you may find it difficult to stay motivated. Here are some tips that may help spur you on.

Stick to when you’re most productive

To have a productive day, you should try to follow your personal body clock. You don’t want to set yourself up for failure by trying to accomplish a task when you don’t have the energy. There may be times during the day or night when your symptoms are more manageable. You know your body better than anyone, and sticking to your body clock can help you stay motivated.

Minimize tasks

Breaking tasks into smaller goals can help ease stress and promote feelings of accomplishment. In turn, this can lead to greater accomplishments and an overall better sense of well-being. Perhaps you’re reorganizing and want to move several small items to another room. Because XLH typically affects walking, why not spread the task over two or three days? Then reward yourself with something you like to do.

Reach out

Developing and maintaining a support network is important for physical and mental health. Positive support from friends, family, peers, and colleagues can make you more resilient and help you stay motivated. Your healthcare provider may know of an online support group, or you may try the XLHLink page for a list of XLH resources.

Make time to rest

Constantly dealing with symptoms such as muscle weakness and arthritis can be tiring. So schedule time each day to rest or relax, and appraise your family or caregiver. When the time comes, focus on nothing except resting. This is important for your emotional and physical health.

Unwind with music or a book

Music can be restorative when you’re feeling down. Turn on your favorite sounds and get lost in the moment. One song may move you spiritually, while another may help you relax. If you need to get moving, an upbeat tune may be just the ticket.

Likewise, a good book can lift your spirits. Or it can introduce you to another country or culture, and maybe motivate you to learn more.

Make lists

You may find yourself constantly dwelling on what’s wrong. To counter this tendency, make a list of things XLH prevents you from doing, then a list of potential workarounds for each limitation. If it’s too painful for you to chop vegetables, for example, ask your partner or a friend to do this in advance, so they’re ready when you want to cook. Retaking control of your situation incrementally promotes optimism.

Get outside

If you’re feeling up to it, and the weather permits, get outside. Having a seat in the sun by some water or flowers also helps to relieve anxiety and depression. If you can’t go out, consider opening a window and letting fresh air in. If birds are singing, that’s a bonus.


Last updated: May 15, 2020


X-Linked Hypophosphatemia 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 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.