How to Explain POTS to Friends and Family

Introduction

I vividly recall the day I had to explain POTS to my family for the first time. It was a challenging task, trying to put into words something that felt so complex and deeply personal. I wanted to make sure they understood what I was going through, but I struggled to find the right starting point. This is a common difficulty for many people with POTS, which is why I’m writing this article—to help you explain POTS to your loved ones in a way that’s easy to understand and relate to.

POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s a condition that affects the autonomic nervous system, which controls many of our body’s automatic functions like heart rate, blood pressure, and digestion. When a person with POTS stands up, their heart rate increases rapidly, and they may experience a range of other symptoms. This condition is more common in women and typically starts between the ages of 20 and 40, although it can affect people of all ages.

Understanding POTS is important for both those who have it and those who want to support them. For people with POTS, having a clear understanding of their condition can help them manage their symptoms better and explain their needs to others. For friends and family members, understanding POTS can help them provide better support and empathy to their loved ones who are dealing with this challenging condition.

POTS can be difficult to explain because it’s an invisible illness. People with POTS often look healthy on the outside, even when they’re struggling with severe symptoms. This can make it hard for others to understand the impact of POTS on daily life. Additionally, POTS symptoms can vary greatly from person to person and even from day to day for the same individual, which can add to the confusion.

In this article, we’ll explore different ways to explain POTS to friends and family. We’ll cover simple explanations that anyone can understand, as well as more detailed information for those who want to learn more. We’ll also discuss how to talk about the impact of POTS on daily life and how friends and family can offer support. By the end of this article, you’ll have a toolkit of ideas and strategies to help you explain POTS to the important people in your life.

Understanding POTS

Definition

Postural Orthostatic Tachycardia Syndrome, or POTS, is a complex condition that affects the way a person’s body regulates blood flow. It is characterized by a sudden increase in heart rate when a person stands up. Specifically, the heart rate jumps by at least 30 beats per minute within 10 minutes of standing. In many cases, it can even reach over 120 beats per minute. Unlike some other conditions that affect blood pressure when standing, POTS doesn’t cause a big drop in blood pressure. The main problems in POTS come from two things: not enough blood getting to the brain and the body’s fight-or-flight system working too hard.

Symptoms

People with POTS can experience a wide range of symptoms, which can make the condition tricky to recognize. The most common symptoms include:

A racing heart: This feels like your heart is pounding or fluttering in your chest.
Dizziness: You might feel like the room is spinning or that you’re about to fall over.
Lightheadedness: This can make you feel woozy or like you’re going to faint.
Fainting: Some people with POTS actually pass out, especially when they stand up quickly.
Nausea: You might feel sick to your stomach, like you’re going to throw up.
Fatigue: This isn’t just feeling tired – it’s a deep exhaustion that doesn’t go away with rest.

These symptoms often get worse in certain situations. Standing for a long time can make them flare up. Hot weather or being in a warm room can also make things worse. Physical activity, like exercise or even just walking around, can trigger symptoms too. Some people with POTS also have other problems like headaches, shaky hands or legs, and feeling very anxious or worried.

Causes

Doctors and scientists are still trying to figure out exactly what causes POTS. They think there are several things that might play a part:

Nerve problems: Sometimes the nerves that control blood flow in the body don’t work right.
Low blood volume: Some people with POTS don’t have enough blood in their body.
Blood pooling: In some cases, blood gets stuck in the legs instead of flowing back up to the heart.
Oversensitive nerves: The body might react too strongly to signals from the nervous system.
Mental health: Stress and anxiety can make POTS symptoms worse.
Being out of shape: If someone has been sick or inactive for a long time, their body might have trouble adjusting to being upright.

Impact

POTS can really change a person’s life in big ways. Simple things that most people don’t think twice about can become huge challenges. For example:

Grocery shopping might feel like running a marathon because of all the standing and walking.
Cooking a meal could be exhausting, making it hard to eat healthy.
Going out with friends might need careful planning to avoid triggers like heat or long periods of standing.
Work or school can be difficult because of fatigue and trouble concentrating.

These challenges can make people with POTS feel alone or left out. They might have to skip social events or cancel plans at the last minute if they’re not feeling well. This can be hard for friends and family to understand, especially since POTS is an “invisible” illness – people often look fine on the outside even when they feel terrible. Relationships can become strained when loved ones don’t understand why the person with POTS can’t do certain things or needs to rest so much. It’s important for both the person with POTS and their loved ones to learn about the condition and communicate openly about its effects.

Preparing for the Conversation

Gather Information

Before explaining POTS to friends and family, it’s crucial to arm yourself with as much information as possible. Take the time to research and understand the condition thoroughly. Websites like Awareness for POTSies and Normalyte are excellent resources that offer valuable information and personal stories about living with POTS. These sites can help you grasp the complexities of the condition and provide you with accurate, up-to-date information. As you gather information, make notes of key points and interesting facts that you think will help your loved ones understand POTS better. It’s also helpful to look for simple analogies or explanations that can make the condition easier to understand for those who aren’t familiar with medical terms.

Identify Key Points

When explaining POTS to your friends and family, it’s important to focus on the most essential information. Start by explaining what POTS stands for: Postural Orthostatic Tachycardia Syndrome. Break down the meaning of these words in simple terms. Next, describe the main symptoms of POTS, such as rapid heartbeat, dizziness, and fatigue when standing up. Explain how these symptoms affect your daily life, including why you might need to sit or lie down frequently, why you might be more tired than usual, and why certain activities might be challenging for you. It’s also helpful to mention that POTS is a chronic condition that can vary in severity from day to day. Be prepared to explain any lifestyle changes or treatments you’re using to manage your symptoms.

Anticipate Questions

Your friends and family will likely have many questions about POTS, so it’s helpful to anticipate these and prepare answers in advance. Some common questions you might encounter include:

“What causes POTS?” Be ready to explain that the exact cause isn’t always known, but it can be triggered by various factors such as viral infections, pregnancy, or traumatic events.
“How can we help?” Prepare a list of specific ways they can support you, such as understanding when you need to rest or helping with tasks that might be difficult for you.
“Is there a cure?” Explain that while there’s no cure for POTS, there are treatments and lifestyle changes that can help manage symptoms.
“Will you get better?” Be honest about the nature of POTS as a chronic condition, but also mention that many people see improvements with proper management.
“Is it contagious?” Reassure them that POTS is not contagious.

By anticipating these questions and preparing clear, simple answers, you can help alleviate their concerns and foster a supportive environment. Remember to be patient and open to follow-up questions, as it may take time for your loved ones to fully understand POTS.

Explaining POTS to Friends and Family

Start with the Basics

When explaining POTS to your friends and family, it’s important to begin with a simple explanation of what the condition is. You can start by saying something like, “POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s a condition that affects my body’s ability to regulate blood flow when I change positions, especially when I stand up.” This basic explanation provides a foundation for understanding the condition.

Next, you can explain some of the key symptoms. You might say, “When I stand up, my heart rate increases very quickly, which can cause me to feel dizzy, lightheaded, or even faint. I also often feel very tired, even after doing simple tasks.” By describing these common symptoms, you help your loved ones understand what you’re experiencing on a daily basis.

It’s also helpful to mention that POTS is a chronic condition, meaning it’s long-lasting and doesn’t have a cure yet. However, you can reassure them that there are ways to manage the symptoms and improve quality of life.

Use Analogies

Analogies can be very helpful in explaining complex medical conditions like POTS. One effective analogy is to compare your blood vessels to a garden hose. You could say, “Imagine my blood vessels are like a garden hose. In a healthy person, the hose squeezes tightly when you stand up, helping to push blood back up to the heart and brain. But in someone with POTS, the hose doesn’t squeeze properly, so blood tends to pool in the lower body when standing up.”

Another useful analogy is to compare your body to a car with a faulty fuel pump. You might explain, “Think of my body as a car. The heart is like the fuel pump, and blood is the fuel. In a normal car, when you step on the gas pedal (like when I stand up), the fuel pump works harder to get fuel to the engine. In my body, the ‘fuel pump’ doesn’t work quite right, so it has trouble getting enough ‘fuel’ to my brain when I stand up.”

These analogies can help your friends and family visualize what’s happening in your body and why it causes the symptoms you experience.

Share Personal Experiences

Sharing your personal experiences with POTS can help your loved ones understand how the condition affects your daily life. You might describe a typical day, saying something like, “When I wake up in the morning, I often feel dizzy and nauseous. It can take me a while to get out of bed because I need to sit up slowly to avoid fainting. Throughout the day, I might need to take frequent breaks to lie down or sit with my feet up to help manage my symptoms.”

You can also explain how POTS affects your ability to do certain activities. For example, “Standing in line at the grocery store can be really challenging for me. I might need to lean on the shopping cart or find a place to sit down to avoid feeling faint. Hot showers can also be difficult because the heat makes my symptoms worse.”

By sharing these personal experiences, you help your friends and family understand the challenges you face and why you might need accommodations or support in certain situations.

Address Concerns

When explaining POTS to your loved ones, it’s important to address common concerns and misconceptions. Many people might not understand how a condition that seems simple can have such a big impact on your life. You can explain that while POTS might not be visible from the outside, its effects can be severe and far-reaching.

You might say, “Even though I might look fine on the outside, POTS affects many aspects of my life. It can make it hard for me to work, exercise, or even do simple tasks around the house. It’s not just about feeling dizzy when I stand up – it can cause brain fog, fatigue, and other symptoms that affect me throughout the day.”

Encourage your friends and family to ask questions about POTS. You can say, “I know POTS can be confusing, and I’m always happy to answer questions about it. If there’s something you don’t understand or want to know more about, please feel free to ask me.” This open communication can help build understanding and support.

Lastly, provide them with reliable sources of information about POTS. You could say, “If you want to learn more about POTS, there are some great websites and organizations that provide accurate information. I’d be happy to share some of these resources with you.” This can help them better understand your condition and how to support you.

Managing Reactions and Responses

Anticipating Reactions

When explaining POTS to friends and family, it’s important to be prepared for a variety of reactions. Some people might be surprised to learn about your condition, while others may express genuine concern for your well-being. In some cases, you might encounter skepticism, especially if your symptoms aren’t always visible. It’s crucial to approach these conversations with patience and understanding. Remember that it’s natural for your loved ones to have questions and need time to process this new information. To help them better understand, you can encourage them to ask questions about your experience with POTS. You can also provide them with reliable resources you’ve gathered, such as informational websites or brochures from reputable medical organizations.

Handling Misconceptions

Misconceptions about POTS are common, particularly among those who are unfamiliar with the condition. Your friends and family might have incorrect ideas about what POTS is and how it affects you. It’s important to address these misconceptions gently and provide clear, factual information. For example, if someone thinks POTS is just about feeling tired all the time, take the time to explain the wide range of symptoms you experience. You can describe how POTS affects your heart rate, blood pressure, and other bodily functions. Share specific examples of how these symptoms impact your daily activities, such as difficulty standing for long periods or experiencing brain fog during conversations. By providing concrete examples, you can help your loved ones better understand the challenges you face.

Seeking Support

When explaining POTS to your friends and family, it’s essential to emphasize the importance of their support. Let them know that their understanding and patience play a crucial role in your ability to manage the condition. Encourage them to learn more about POTS by sharing resources you’ve found helpful, such as educational videos or articles from reputable medical sources. Explain that POTS can be unpredictable, and there may be days when you’re not feeling your best. Ask for their patience and understanding during these times. Additionally, inform them about support groups and online communities that exist for people with POTS and their loved ones. These resources can be valuable for both you and your support network, providing a space to share experiences, ask questions, and find emotional support from others who understand the challenges of living with POTS.

Conclusion

Explaining POTS to friends and family is an important part of managing the condition and building a strong support system. When you take the time to help your loved ones understand what you’re going through, it can make a big difference in your daily life. Start by explaining the basics of POTS in simple terms. Use easy-to-understand analogies that relate to everyday experiences. This can help people grasp the concept more easily.

Sharing your personal experiences with POTS can be very helpful. Tell your friends and family about how POTS affects you specifically. This might include describing your symptoms, challenges, and how your life has changed since being diagnosed. By opening up about your experiences, you allow others to better understand and empathize with your situation.

It’s important to address any concerns or questions your loved ones might have. They may worry about your health or wonder how they can help. Be patient and answer their questions as best you can. If you don’t know the answer to something, it’s okay to say so. You can offer to find out more information together.

Remember that explaining POTS is a process, and it may take time for people to fully understand. Don’t feel pressured to explain everything all at once. You can share information gradually as you feel comfortable. It’s also okay to set boundaries and let people know when you need rest or support.

Seeking support from both your loved ones and professional resources is crucial. Encourage your friends and family to learn more about POTS from reliable sources. You might even suggest they attend a doctor’s appointment with you if you’re comfortable with that. Professional resources, such as support groups or counseling, can also be valuable for both you and your loved ones as you navigate life with POTS.

By taking these steps to explain POTS to your friends and family, you can create a more supportive and understanding environment. This can lead to better management of your condition and improved overall well-being.

References

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3904426/
https://www.awarenessforpotsies.org/friends-and-family
https://normalyte.com/blogs/news/project-pots-episode-3-importance-of-friends-when-you-have-pots-postural-orthostatic-tachycardia-syndrome?srsltid=AfmBOopHt9y8nerGQg74HyLRFqaVIyp3RXFs9NCKN9OUh2Uby-xqQHTi
https://normalyte.com/blogs/news/project-pots-episode-14-disclosing-your-pots-condition-postural-orthostatic-tachycardia-syndrome?srsltid=AfmBOop7AcRfTRAYpq2d0XUB3WRMcUy9yfC5veyTiIfKioHk1c9uA_9j
https://www.reddit.com/r/POTS/comments/15qfqti/how_would_you_explain_pots_to_someone_who_has/