An exocrine pancreatic insufficiency (EPI) diagnosis will give you a lot to think about and do.
Besides changing your diet and talking with your doctor about treatment, you’ll want to consider letting your family, friends, and co-workers know about your diagnosis. Support from the people in your life can help you feel empowered and ready to manage life with EPI.
It is important to help the people in your life understand what the condition is and how they can properly support you. Yet knowing when or how to have these conversations can be difficult.
Here is a guide on how to explain EPI and answer the questions you’re likely to receive from others.
EPI is a chronic condition that occurs when your pancreas cannot produce enough of the enzymes your body needs to break down and digest fats, proteins, and carbohydrates in the foods you eat.
Because your body cannot break down the food you eat, it cannot use the food properly. This can lead to symptoms like:
- diarrhea
- weight loss
- oily stools
- muscle cramps
- loss of appetite
Over time, the lack of absorption of fats and nutrients can lead to malnutrition.
Most people diagnosed with EPI have another chronic health condition that impacts the pancreas.
According to a
The exact prevalence of EPI is unknown, but it remains generally rare, even though it is common in people with certain conditions.
Revealing your EPI diagnosis to the people in your life may feel hard, and that’s OK. Each person should be in control of how much they reveal and when or whether they discuss their diagnosis at all. Disclosure of a health condition is never a simple decision.
If you decide you do want to talk with your family, friends, and co-workers about EPI, remember there is no right or wrong way to reveal your diagnosis, and there is no timeline, either.
Instead, think about why you do or don’t want to share your diagnosis. You can do this by creating a list of pros and cons. Here are some to consider:
Pros
- You don’t have to hide experiences or sneak away to take medication.
- You can feel empowered by your decision to disclose.
- You can have allies in your care, who help improve your quality of life.
- You may find someone who is in a similar situation and can provide guidance.
- You can lean on the people in your life for support without needing to give an explanation.
Cons
- They may be judgmental.
- They may not be understanding or empathetic.
- They might discriminate against you or purposefully leave you out of future activities for fear you will get sick or won’t be able to attend.
- You may fear people are expecting you to look sick or watching for signs and symptoms of EPI.
- They may be confused and have trouble properly expressing their concern.
- Start with one person. Have the discussion with just one person first. This can be someone you feel closest to, and the conversation can act as a practice run for future discussions. Doing this can help remove some of the anxiety you may feel in talking to several people at once.
- Talk in a place you feel comfortable. A loud restaurant or quiet library may not be the ideal place to reveal your diagnosis. You need to find a place where you can have an honest discussion without worrying about interruptions or not being heard.
- Plan ahead. Create a roadmap of what you want to say. You don’t have to write anything down, but you can if you want to. Go through your points several times so you feel certain you can say everything you want to without missing anything.
You will be able to better navigate conversations about your EPI diagnosis if you are prepared. Your family, friends, and loved ones are likely to have questions, and it will help to anticipate some of them.
Consider the answers to the following questions.
Can you live a “normal” life with EPI?
Yes, but “normal” may look a little different now. EPI requires constant vigilance and treatment.
You may have to, for example, remember to take a pill with each meal. You may also have to change your diet to make up for the nutrients your body isn’t typically absorbing.
Your symptoms may affect your quality of life, and you may have to adjust your expectations in some scenarios.
Is EPI a serious disease?
It can be, but treatment and lifestyle changes can help you address your symptoms and improve your quality of life. Ultimately, EPI is a lifelong condition, but focusing on your body, your diet, and your overall health will help improve your outlook.
How will your eating habits change?
You may have to be more selective with what you eat. People with EPI need a balanced diet with lots of vitamins and nutrients to maximize what the body absorbs from food.
Research from 2020 recommends that people with EPI:
- Avoid high fiber diets.
- Eat a regular amount of fats.
- Have more frequent small meals as opposed to fewer large meals.
Some foods may be irritating and make symptoms worse. These can be hard adjustments, but there are many ways to enjoy meals while managing EPI.
Consult with your doctor or a dietitian on the adjustments you should make for EPI.
Telling family members, children, and friends
Your quality of life may improve significantly with the support of your family and friends. The diet and lifestyle changes required to treat EPI are significant. As symptoms progress, you might need to make more changes.
The people in your life will be impacted by these changes, to some degree.
For example, you may have to visit the restroom frequently, so accommodations will need to be made for travel or daily excursions. You might have to turn down social invitations sometimes. Ask for patience and understanding in those moments.
Your diet will change, too. So if you are not the person in your home that prepares meals, begin a conversation about what that means for family meals and food shopping. It may also mean changes to when or where you can eat.
It may make sense to talk with your spouse, your parents, or a best friend before revealing the diagnosis to the rest of your family or friend group. This can prepare you for different conversations later.
With young children, you can start by explaining a little, but remember that children are resilient and curious. They may have a lot of questions, and you should tailor the answers to their age and comprehension level. Teach them about the treatment you are receiving and try to include them in the conversation in small ways.
Telling employers and co-workers
It can feel like more is at stake when you are revealing a diagnosis to your employer or co-workers. It might seem like this conversation puts your livelihood in jeopardy, but you have options.
You do not have to reveal a diagnosis to anyone if you are not comfortable. What’s more, you do not have to reveal a diagnosis if you think doing so would place you on the receiving end of prejudice or discrimination. You might choose to keep your diagnosis to yourself if your symptoms are not affecting your work.
If you do decide to talk about EPI with an employer, you can disclose as little or as much as you want. You can keep things general with statements like “I have a medical condition or illness” instead of naming the specific diagnosis.
You can also outline what accommodations you need. Employers are required to provide “reasonable accommodations” under the Americans with Disabilities Act. It is illegal for employers to ask specific questions or seek out more information about your health condition.
Reiterate to your employer that you are a hard worker, and come prepared with ideas about how to lessen the effects of EPI on your work. For example, you might ask to be seated closer to a bathroom.
Telling a romantic interest
If you are in a new relationship or dating, you may be wondering when the right time to reveal a diagnosis like EPI is. For each person, the right time will be different.
Consider what is fair to you and your potential significant other.
You may not find it reasonable to reveal your chronic condition to each person you date. It doesn’t need to be first-date material, but it can be if it’s an important part of your life you want known.
However, you probably shouldn’t wait to disclose too long into your dating relationship. Your diagnosis could affect your future together.
If you do share your diagnosis, give your potential romantic partner time to absorb the information. Like your friends and family members, they will likely have questions you can answer.
Give them the space and time to process what you’ve said and reflect on what it means for your relationship.
Navigating an EPI diagnosis can be difficult, and it can heavily affect your life, your future, and your relationships. However, you do not have to go through this journey alone.
Whether you talk about EPI with the important people in your life is your decision. You do not have to reveal your diagnosis unless you feel comfortable.
Revealing your EPI diagnosis to friends, family members, colleagues, and potential significant others can ensure that you have the emotional and physical support you need. With time and practice, you will feel more comfortable sharing your diagnosis and educating others about EPI.