Find out more about ways to let people know how hypophosphatasia (HPP) is affecting your life.
People with hypophosphatasia (HPP) may find themselves in a situation where someone is demanding more from them than they are able to give. This can be a very frustrating thing and can lead to conflict.
The most important thing that needs to happen is for communication between both parties to improve. And because you’re the only one who knows how you’re feeling, it’s pretty much up to you to start the conversation. You know when you’re not feeling well and have less energy on a given day. But other people can’t always tell how you’re feeling because you may not look different on the outside, even though you might be feeling awful on the inside.
For example, if your mom outlines a busy schedule or is rushing you in the morning, it’s important to let her know, as early as possible, that her expectations may not be met that day. You may need to check in with her several times because symptoms can come and go and feelings can change. Also, tell her if you’d rather not have scheduled activities during certain times of the day and make sure to tell her if you need a break. Let her know if you have extra schoolwork and won’t be able to help her make dinner or run errands that day. Your family loves you and will understand if you are open and honest with them about how you are feeling.
Attending high school or college can be difficult for some young people with HPP, but there are resources available to help you. Note that you may need to be proactive here. You and your family can work with school administrators to create an Individualized Education Plan (IEP) or a less formal plan to help with learning or physical needs and to find classes that are more accommodating. It’s a lot easier to get the help you need if you plan ahead and communicate openly with staff about your condition. It may also be a good idea to let your teachers or professors know what your limitations are and how they can help. If you describe how you’re feeling and how HPP can affect you on a day-to-day basis, educators will understand and will work with you to ensure your success.
Communicating how you’re feeling to your friends may be more difficult. Whether you realize it or not, you can face a lot of pressure from your friends to be active and fun at all times. The problem is, it can be hard to make it out to that new restaurant, see your favorite singer at the concert, or join your friends on that extended weekend if you’re not feeling well. Most of the time your friends will understand and can change or tone down the planned events—if you let them know that you want to take it easy. And even if you miss out on a few things here and there, it’s important to let your friends know how you’re feeling and why you need to change the plan.
Try to understand that people are busy and can get caught up in their own activities and problems. It doesn’t mean that they don’t care about you or that they wouldn’t make adjustments to help or include you. It just means that sometimes people aren’t aware of what you’re going through or how they can help. So, be brave, take a little extra time, and start the conversation.
When you have questions about HPP, speak with your doctor first. Our informative articles and patient stories are frequently updated, so visit Stand with HPP when you are seeking support from the HPP community. We are here to help you find what you’re looking for and help you stay connected.