Talking With Your Doctor

It's important that you and your doctor are able to communicate well so you can get what you need. Here we provide tips that can help make it easier to talk with your doctor and other members of your health care team.

You must be able to talk with your doctor to get what you need

Hypophosphatasia care often involves more than one doctor. You may even have a team of doctors, nurses, and other people taking care of you. You may get information from many of these people, but it's a good idea to pick one doctor to be the one you go to with questions. Most people choose the doctor they see most often.

You should feel at ease with your doctor. But sometimes it takes a little time and work before this happens. Take the time to ask your questions and make your concerns known. Likewise, your doctor should take time to answer your questions and listen to your concerns. If you and your doctor feel the same way about sharing information and making choices, you will probably have a good relationship and your needs will be met.

Ask yourself, "How much do I want to know?"

Having an idea of how much you want to know is the first step toward feeling good about talks with your doctor.

You may want to know a lot of medical details about your illness. Some people feel more in control of what's happening to them when they know all of the facts. Decide how much detail about HPP and your care you want, and let your doctor know.

But maybe you want only small amounts of information. Some people get upset when they are told too many details. They may want simple directions, what their treatment will be and when it will be done. They feel overwhelmed by medical details and would rather leave most decisions to the doctor.

You may want to discuss everything. Some people want to talk about the pros and cons of all the options before they choose and start treatment. They find reliable sources of information and learn all they can about what's going on. They try to fully understand their Hypophosphatasia and what they can expect.

Don't be afraid to tell your doctor how much or how little you want to know.

Remembering what your doctor says

It's hard to understand complex information when you are anxious or afraid. And sometimes, without knowing it, doctors use words their patients don't understand. If you don't understand something, ask your doctor to explain it to you.

Even if the doctor carefully explains things, you may not hear or remember all that is said. Here are some ways to help you remember everything your doctor tells you.

• Take notes on what your doctor says.
• Ask if you can record your talks.
• Take a family member or friend there with you. He or she can remind you of questions you want to ask and help you remember what the doctor said. You may want to take along the person who talks to your family about how you are doing. This will keep that person informed and help your family feel included. It will also keep you from having to answer a lot of questions. You may want your family's help in making decisions, so keeping them up to date is a good idea.

The doctor-patient relationship

A good doctor-patient relationship is a 2-way street. Here are some ways you can help keep up your end of the relationship:

• Tell your doctor about any changes in your body and how it is working-from sleep and bowel habits to headaches. Make notes so you can tell your doctor everything.
• Ask your doctor what changes you should call about during office hours and which ones would need an emergency call during times when the office is closed.
• Discuss your concerns about how HPP will affect your life. Be honest about your habits-even if they're habits that you may not be proud of, like smoking or drinking. Never hold back information. Something you think is minor could affect your treatment. Or something you think is serious might be easily relieved.
• Make a list of all your questions, and take it with you to your doctor visits. Don't be ashamed or shy about asking these questions. There is no such thing as a "dumb" question.

Talking With Friends, Relatives and Co-Workers About Your HPP

The diagnosis of Hypophosphatasia can be overwhelming, both for you and for your friends and relatives. Here, we offer some suggestions to help you, your friends, and family talk about HPP.

Talking With Friends and Relatives About Your HPP

The diagnosis of Hypophosphatasia can be overwhelming, not only for you, but also for your friends and relatives. People often don't know what to say. They may feel sad and uncomfortable and may be afraid of upsetting you. Sometimes people find it easier to say nothing because they are afraid of saying the wrong thing. Some people find it easy to talk, while others may become overly careful or act too cheerful.

How are you feeling?

It's normal to wonder, "Why me?" or to feel sad, angry, or afraid. You will most likely have many different emotions as you learn more about your diagnosis. Physical changes and pain related to HPP itself can also affect your emotions. The first step is to admit to yourself how you feel. It's OK to allow yourself to feel the way you do.

Getting ready to talk to others

Only you can decide when to talk to your friends and family about having Hypophosphatasia. Most people need and want to talk to someone when they find themselves in this kind of situation. Sometimes, telling those closest to you helps you to begin to take in the reality of what's happening. Some people find that by talking, they begin to solve problems and think about other issues as their family and friends ask questions.

How to talk to others

Think about how much you want to share. You may want to explain what type of Hypophosphatasia you have, that there is no treatments or cure , and what your outlook (or prognosis) is. People are very sobered by the news that someone has a rare bone disease. You may want to reassure them that you will do whatever it takes to fight HPP and would like their support and encouragement.

It's common for people to have many questions about Hypophosphatasia and how it's treated or what it is. It can be OK to explain all this to 1 or 2 close friends, but it may get tiring to tell a lot of people this much detail over and over again. You can always suggest that they call or visit our Web site to learn more for themselves, or to find out how they can best help you.

What can family and friends do to help?

One of the first things a friend or family member will often say is "What can I do to help?" You may be tempted to say, "Oh, nothing right now. We're just fine." Maybe you don't really know what you need, want your privacy, or feel you have all you can handle without having more people around you. Remember that most people really do want to help, and it is likely that you will need extra help at some point adjusting to HPP.

Your loved ones need to do things for you and want to support you. It helps them feel like they're part of your life. Allow friends and family to help you. Be as specific as possible about the kind of help you need. For example, tell them when you need a ride to the doctor, or find out if they might be able to help with housecleaning, yard work, or child care. There will be times when you don't know what you need, but even just saying that will be helpful. It also gives them a chance to offer something they can do for you.

Try to encourage loved ones to talk to you about how they are feeling so you can work through questions together. You can say, "How are you doing? Can you believe this?" This gives your friend or family member permission to talk with you about their feelings. But if you are not prepared to hear about their fears and worries, don't ask questions like this. It can be tough enough to manage your own emotions and figure out how you feel, without worrying about others. It takes effort and emotional work that you may not have the energy for. But if you want to foster openness, this is one way to do so.

Sometimes you may not want to talk about how you feel or about how others feel. You can gently tell others this just by saying something like, "You know, usually I am OK to talk about things like this, but today I just can't handle it. I'm sure you understand." This way you set your own boundaries about when and under what circumstances you are able to discuss your illness.

When others become impatient or angry with you

Sometimes those close to you may become angry too. Just as you are going through many different emotions, those around you may be going through the same kinds of feelings. Most people will feel angry at some point, but try to keep in mind that family and friends are angry with the situation - not with you. You are probably going through exactly the same thing at times.

You may hear, "You aren't doing the things you used to do." Children, and even some adults, can be extremely self-centered. Your social, family, and work roles will change as you begin to focus on what you can and can't do. Your energy levels will be low at times and you may not be able to do all that you had been doing. You will adjust more easily if you explain this to those around you and share your reactions to the different changes taking place in your life. Talk to your family about how tasks can still be done even though you will not be able to do all of them yourself.

Keep life as normal as possible

As much as you can, allow yourself and your family members to keep life as normal as possible while you are adjusting to HPP. Encourage your family to keep doing the things they always did without feeling guilty (enjoying hobbies, playing sports, exercising, spending time with friends, and so on). Children, especially, benefit from the routine, but adults also find that it offers them an anchor for day- to- day life.