When your doctor tells you that you have a condition called PBC (Primary Biliary Cholangitis), you probably have a thousand questions running through your mind. It's normal to wonder, "What kind of disease is this? What will happen to my life? What do I do now?" It's natural to feel scared and anxious when you learn that this is an incurable, long-term disease. But don't worry, you don't have to go through this journey alone. If you understand this disease well and build a support system that can help you, you can definitely live a strong and happy life with this condition. Let's see how to find the strength and knowledge you need for this journey.
Your first and best guide: Your doctor
When you learn about this disease, the person who can best answer your questions is your doctor. Therefore, it is very important to build a good, strong relationship with your medical team.
Think about how many questions you have about this disease, its nature, how it affects your life, the medications you need to take, food, and exercise. Talk to your doctor about all of these things without fear or hesitation. Don't dismiss them as minor issues. Listen to everything that's on your mind.
It will be easier for you if you do these things:
- Write down your questions: Before you go to see the doctor, write down all the questions you want to ask in a book. Sometimes when we see the doctor, we forget what we wanted to ask. When you write them down like this, you won't miss any of those questions.
- Take notes: Write down everything the doctor says, such as the instructions he gives you, the details of the medication, and the tests you need to do. It will help you to review it when you get home.
- Speak up: If you don't understand something, don't be afraid to ask again. "Dr., I didn't understand what you said. Could you explain it again in a simpler way?"
By actively participating in your treatment process in this way, you will be able to deal with this disease with more control , without unnecessary fear.
Be very careful when searching for information on the Internet!
Nowadays, the first place we turn to when looking for information about anything is the internet. The internet can be a great place to find information about PBC. However, it is like a double-edged sword. Not all information on the internet is accurate. Sometimes, incorrect and misleading information can confuse you and harm your health.
Don't leave everything to "Dr. Google." Before making a final decision about any information you find online, be sure to talk to your doctor about it.
Some websites may publish false advertisements such as "This medicine will cure your illness in seven days." Or, they may mislead you with various treatments that have not been scientifically proven. Don't be fooled by these.
So, how do we find a reliable website?
To find good, reliable information, you should check out websites run by government health agencies, reputable hospitals, and university medical schools. There is also a lot of valuable information on the websites of international patient advocacy groups. For example, organizations like the American Liver Foundation and the PBCers Organization can be mentioned.
When you look at information on a website, ask yourself these questions to see if it's trustworthy.
| Matter to consider | The question you should ask yourself |
|---|---|
| Trading objectives | Is this website trying to sell any products or services? Is it sponsored by any for-profit organization? |
| Bias | Does this website only highlight the opinions of a particular individual or group? |
| Medical confirmation | Has the information here been reviewed by a medical professional? Has this information been confirmed by scientific studies? |
| Responsibility and ownership | Can you clearly identify who owns this website and who the doctors are reviewing the information? |
| A balanced vision | Does this website present balanced information from different perspectives on a topic? |
Informing your family and friends is also a great strength.
When living with a long-term illness like this, the support of your family and close friends is your greatest strength. But in order to help you, they also need to be aware of this disease.
Talk openly with them about your condition and how you feel. Explain to them that PBC is not contagious and how it can affect your lifestyle. It will be easier for them to help you when they understand that you may feel tired some days or may not be able to eat certain foods. It is also a good idea to bring your husband, wife, or a close family member with you when you go to see the doctor.
Don't forget about mental health on this journey.
It is normal to feel sad, anxious, and sometimes even angry when you learn that you have a condition like PBC. Don't try to deal with these feelings alone. Talking about your feelings with someone you trust can be a great source of comfort. This could be your partner, a close friend, or a family member.
When living with a disease like this , mental health is as important as physical health . You can't be healthy without inner happiness.
If you feel that you are having difficulty controlling your anxiety and stress, talk to your doctor about it. If necessary, he or she will refer you to a psychologist for help. There is no reason to be ashamed or afraid of it.
Take-Home Message
- Although being diagnosed with PBC can be a life-changing challenge, with the right knowledge and support, you can move forward stronger.
- Your doctor should be your main and most trusted source of information about your medical condition.
- Be very careful when searching for information on the Internet. Always use only trusted websites and discuss the information you obtain with your doctor.
- Your family and friends are your greatest strength. Talk openly with them about your situation and seek their support.
- Maintaining your physical health is as important as your mental health. Don't hesitate to seek professional help if needed.
- Remember, you are not alone on this journey!
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