Friends And Family

Resources and information for those who love someone with POTS and/or co-occurring conditions that many in our community also navigate.

If you are reading this, it likely means you love someone with POTS and/or other co-occurring conditions. So first things first, we want to thank you for taking the first step, which involves learning more about these illnesses and how you can help. : ) This in itself means so much to everyone in our community who is coping with and navigating these illnesses; we can assure you of that. It can be very difficult to watch someone you care about struggle with debilitating symptoms, or you may be having trouble adjusting to how this illness has impacted your relationship with this person you care so much about. Perhaps you are frustrated that they can’t do everything they used to be able to do with you; perhaps you are frustrated because they cancel when making plans more often; perhaps you feel helpless because you wish you could do more to help your loved one. Perhaps you are having trouble understanding what they are experiencing because so much of it is difficult to visualize or is new to you. Our goal is to help you understand these illnesses to alleviate frustration, minimize feelings of helplessness, and help you feel empowered to support, motivate, care for, and love this person (or people) in your life. We put together a list of commonly asked questions and answers, which we hope help. You can also send us a message or question via our instagram page (linked above), or use the Contact Us section to message our team. The questions are listed below. When clicking on individual questions, you will be automatically directed to the explanations listed below.

Applicable Questions and Answers Listed Below:

What is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome, and it is a form of autonomic dysfunction. Autonomic dysfunction refers to malfunctioning of the autonomic branch of our nervous system, which controls many of the involuntary bodily functions we don’t normally have to think about! It has been recently suggested that POTS is both a peripheral nervous system (PNS) and central nervous system (CNS) disorder as well (Blitshteyn, 2021). The severity can vary, the symptoms can vary, and the forms of POTS can also vary. If you would like to learn more about what POTS is, we recommend reviewing the content under our Learning About POTS sections.

What treatments are available?

Although there is currently no cure, there are a number of lifestyle modifications that can be made, as well as non-pharmacological interventions, and pharmacological interventions that can be extremely helpful. For many in our community, access to all of these can significantly improve their quality of life and overall daily functioning. This being said, they aren’t as effective for everyone in our community, especially when battling other co-occurring conditions. To learn more about some of these, we recommend looking at our Managing Symptoms, Daily Tips and Tricks, Physical Therapy, Occupational Therapy, and Meal Preparation/Nutrition sections.

Outside of your organization and website, where can I go to learn more?

There is a great deal of information on our site which we recommend looking through, and there are also other organizations with information specific to POTS and support groups for caregivers. These include the Dysautonomia Support Network, Standing Up To POTS, and Dysautonomia International. Although all of our organizations are different in their own unique ways, we all strive to provide loved ones with information we hope will be beneficial. The more resources you have access to, the better!

What are helpful things for me to know?

Individuals with POTS are susceptible to flare-ups, which can be quite debilitating. To learn more, see our Navigating Flare-ups section.

It is critical that you believe your loved ones. Most in our community have experienced dismissal and medical gaslighting, so we really need to have loved ones in our lives who don’t question what we are experiencing and instead offer support.
Telling your loved one that you are taking time to learn more about POTS and/or other illnesses they may be navigating daily, and how you can help will likely make their day, if not week. That added support is what individuals in our community really need from you.
Often times, individuals with POTS and other co-occurring conditions have already researched their illnesses thoroughly. Making recommendations such as yoga, meditation, or staying calm may seem helpful but can come off as dismissive. Sometimes the most helpful thing you can do is listen and ask them what would be most helpful. A listening ear and a shoulder to lean on (sometimes literally) can go a long way.

How can I support my loved one when they are struggling?

This is a great question and doesn’t always come easily! Sometimes what we think may be helpful ends up not being helpful, so being mindful of this is very important. As an example, you may think that trying to relate to them by explaining that you know what their pain feels like based on an experience you had when sick is helpful, but it can actually minimize what they are experiencing as they navigate chronic conditions. You may also feel compelled to provide advice, or solve what they may be sharing with you, but most of the time they really are looking for someone to listen and provide compassion more than anything else. Acknowledging where they are, their journey, and their experience is incredibly helpful. If they are struggling with their mental health and you are very concerned, you can also see our I'm Worried About Them section to get some helpful ideas.

Here are some helpful phrases we do recommend, and some phrases we do not recommend.

Phrases we DO recommend:

What would help you the most right now?
I believe in you and will always be in your corner.
I’m glad you continue to make room for what comes up for you.
It must be so hard to fight a battle invisible to so many. I see you, and I see your fight.
I may not be able to fully understand, but I see you, and I am right by your side.
How can I best support you?
How can I help you listen to what your body needs today? Do you need to rest more?
I can’t imagine what you are going through, please just know I am here.
I can see how hard you are trying every single day. You amaze me, you really do.
I’m glad you feel safe opening up to me. I love you and am here to listen.
Is there a way I can help so that you can take more breaks during the day?
I know you have been struggling recently; is there anything I can do to help, even from afar?
I know we have plans this week- is there any way I can prepare ahead of time to make sure you are as comfortable as possible?
Is there anything that would be most helpful for me to know about your illness?
I am so proud of you. I can tell you are in a lot of pain right now and that this moment is very difficult. Please let me know how I can help. I am right here by your side.

Phrases we DO NOT recommend:

It could be so much worse, you really should be grateful.
You look great though, you don’t look sick.
You would feel better if you stopped crying.
Why are you still upset? You need to move on.
You are too young to be that sick.
You just aren’t trying enough.
You aren’t productive when you rest.
Your pain can’t be that bad.
Oh, I know how you feel, I was really sick with ___ last year.
I’m surprised you are this upset.
But at least you still look healthy.
Overall, we recommend avoiding phrases that start with:

Well, at least you don’t have…
If only you would just…
You don’t really look…
You are too young to be that…
Just be grateful you don’t have…
You wouldn’t feel as sick if you just…
If only you were more positive about…
Have you tried…

Why did they develop POTS?

One of the questions providers ask individuals with POTS is “When did you last feel healthy?” Sometimes this question can lead providers to help determine what trigger, or triggers, led to its development. Some of the most common triggers include infections like influenza, Epstein-Barr virus (mononucleosis, also known as mono), and providers are now seeing many cases following COVID-19 infections. Other triggers can include hormonal changes during puberty, surgery, other underlying illnesses, trauma, pregnancy, and/or vaccination. This being said, some cases are idiopathic in nature, meaning the trigger is unknown. To learn more, see our What Causes POTS section. As a syndrome, there can also be other co-occurring illnesses that contribute to or cause POTS. Treating those underlying illnesses, such as MCAS for some, can often lead to improvements in POTS symptoms.

Is research being done to learn more?

Yes, yes, and yes! Thankfully, many providers are working tirelessly to help individuals with POTS through their research efforts. This being said, organizations are always looking to increase funding for research efforts. Quite a lot is being done, but there is still a lot of room for more research. To learn more about research studies that have been done, see our POTS Research section.

Will this impact their future career and personal plans?

This is a difficult question to answer because how POTS impacts individuals in our community varies considerably. Though we can’t predict how their diagnosis will impact their future career and personal plans, we can say that many in our community do find themselves needing accommodations, or find themselves switching careers, and there are a percentage who require disability financial assistance. As a syndrome, it presents differently, the severity can vary, and co-occurring conditions may also contribute towards the impact these illnesses can have. There are some in our community who are able to work or go to school with accommodations, and others who find it to be much more challenging if their symptoms are more severe. The key is ensuring that your loved one is able to access the proper testing and care, that may help them achieve the symptom reduction and relief they need to pursue the paths they envision for themselves.

I don’t really believe it is as hard as they say it is; they look okay to me. Are they being dramatic?

One of the really difficult components when navigating POTS and some of the other co-occurring conditions is that many of the symptoms, and a great deal of the pain, are not visible to most around us. It may be hard to understand how someone can feel so ill when physically they look fine to others, but that is very challenging for many in our community. It may seem confusing why some in our community would want their illnesses to be more visible, but part of the reason is because it can be exhausting to have so many in their lives question the validity or seriousness of what they are experiencing. Though we don’t know your loved one personally, we have not encountered anyone in our community who has been dramatic or who has dramatized their symptoms. In fact, they are more likely to minimize what they are going through and make it seem or sound less severe than it actually is. This is really important to remember. The likelihood is that they are only sharing 5-10% of what they are really going through with you, possibly out of fear given how many in our community are dismissed by loved ones and medical providers. Please listen to them, believe them, and know that what you see on the surface is likely a small percentage of what they are navigating daily. Your love and understanding go a long way.

What are some ways I can make accommodations to help them?

This is a great question! It can really vary depending on the situation, but we will try to include as much helpful information as possible! Helpful accommodations may look like:

Offering indoor options (ideally with air conditioning) when it is warm outside, if they are sensitive to the heat.
Offering places for them to elevate their legs/feet when sitting.
Inquiring about food restrictions is important because many people in our community have severe dietary restrictions.
If holding an event, ensuring there are non-alcoholic options given how sensitive many in our community are to alcohol.
Choosing places to visit that are wheelchair accessible if available (you can call ahead to confirm).
Taking more frequent sitting breaks when out, and being mindful of their need to rest more often.
Providing flexibility when it comes to making plans, as often the ability to foresee symptoms or how they may be feeling on a given day may be challenging.
Taking additional precautions to reduce your exposure, and their exposure, to respiratory viruses. This can include you wearing high quality masks when in indoor settings and crowded outdoor settings such as n95 masks.
Offering virtual alternatives to attending events which may make it easier for them to attend and feel included.
Planning activities that reduce exertion may be helpful, depending on their symptom severity.
If they have MCAS, please ensure to ask about triggers and sensitivities to smells and chemicals, such as perfume, cleaning products, or scented candles. Ensuring these are not present at events or when meeting can be extremely important.
If they have MCAS, ask if they have sensitivities to flowers. There may be certain flowers that are more triggering than others (some have more pungent smells or produce more pollen), so being mindful of this can be helpful.

I am struggling as well; how can I take care of myself?

Just as we encourage everyone in our community to prioritize their self-care and emotional well-being, it is also very important for our loved ones to do the same. This may look like you immersing yourself in activities that you enjoy that bring you added happiness and fulfillment. Even taking 5 minutes to engage in something meaningful can be enough to really help us feel more grounded and steady in a given moment. There are some organizations that offer support groups for caregivers, such as the Dysautonomia Support Network, which has a specific community designed for caregivers that you can access here section.. It may also be helpful to consider working with a mental health professional such as a licensed therapist, as they may be able to give you the added emotional support that you deserve. They may also help you focus on developing healthy coping skills/strategies and working through other aspects of navigating through each day that may be more challenging. It can be difficult to watch our loved ones struggle, especially when we feel limited by what we can do and how we can help. Because of this, it is really important for you to have access to processing what your experience has been as well.

My loved one is young; how can I better explain their illness or aspects of the journey to them?

This can be difficult because the way POTS impacts us, alongside other potential co-occurring conditions, can vary considerably. We say this because what your loved one experiences may be different than what others in our community experience, as it is a syndrome with significant variability. This being said, we tried to come up with some phrases that may help listed below, which we hope you can personalize to meet your needs and the age of your loved one to ensure it is developmentally appropriate.

“The blood in your body isn’t always going where it needs to, but we will do whatever we can to help so you can feel better as soon as possible.”
“You didn't do anything wrong to deserve this; sometimes really good people get sick and we will do the best we can.”
“The medications are helping your body do what it needs to do to help you, like more instructions or a map for your body.”
“It is a lot of medication, but you are doing an amazing job listening to what your body needs. Sometimes we need extra helpers and that’s okay; it is extra love for your body.”
“I know this doesn't taste good, but sometimes we need to eat things we don't like because they can help our bodies feel better."
“I know you don't want to take your medication, but sometimes we need to do things we don't want to in order to heal. Sometimes the things we want can make us feel worse."
“I don't know how long it will be until you are feeling better. You may feel this way for a long time, but I am always going to be here for you no matter what."
“What is normal for you may look a little different than what is normal for other kids your age, but it is still your normal, as hard as it may be. I'm here to help you adjust to it and make it as easy as possible for you."
“Your sickness doesn't define you and it doesn't affect your worth. You mean everything to me, and every day I have with you is a blessing."
“The medications are helping give your body extra instructions and helpers to make sure you start feeling better.”
“I don’t know why doctors aren’t believing you, but we will keep looking until we find someone who can help.”
“It is ok if it is taking you a little longer to do things, your body just needs a little more time and a little extra support. We can talk to your teachers about how they can help - there is nothing wrong with needing more help, we all need more help sometimes.”
“I know it hurts that they aren’t listening to you and I am not sure why; it really feels hard when people don’t listen to us when we need help. Just know how much your voice matters. Please never stop using your voice and fighting for what you know you need.”
“Sometimes we lose friends who we later see weren’t the right people for us, they couldn’t be nice. I don’t understand why they can’t see your beauty and your sparkle. It’s ok to cry when it makes you really sad. I know there are friends out there who will love you and make you so happy.”
“I don’t know why you are feeling so much pain and I will do whatever I can to support you because you are so amazing and deserve the world. How can I help today?”
“I am so proud of you for resting even when I know it is hard to be on the couch or in bed when you want to be playing with your friends or outside. What is something fun you would like to do together while we sit together?”
“There is no place I would rather be than with you, hugging you, supporting you.”

I can’t find supportive providers who understand POTS for my loved one; what can I do?

We want to first apologize on behalf of the medical community as a whole because it is truly heartbreaking how many in our community are unable to access providers who understand POTS, believe that POTS is real, understand common co-occurring conditions, know how to test for co-occurring conditions, and who have the tools needed to help. This leads to a significant amount of pain, dismissal, medical trauma, and diagnostic delays for our community. This is also painful for guardians or other family members/friends who desperately want to get their loved ones the care they need and deserve to see them thriving again. Although the number of providers who are familiar with POTS and other more commonly seen co-occurring conditions is increasing, there is still a significant amount of work that needs to be done, and a great deal of room for improvement. Although we can’t speak to each provider individually, the best provider lists we are aware of can be found through the Dysautonomia Support Network (specific to the United States), and Dysautonomia International (with lists of providers internationally). Other options can include joining support groups through Dysautonomia International specific to your location, where you can ask a larger community which providers in your area they have seen and ask about their individual experiences with each.

Should we be more careful with COVID-19 exposure if a loved one has POTS?

Although we can’t give specific recommendations, we will say that we personally feel it is important for individuals in our community to take more COVID-19 precautions and to avoid exposure as much as possible. To read more about COVID-19 and how it has impacted and continues to impact our community, please see our COVID-19 Infections page.

What are some nice gift ideas for loved ones with POTS?

This can certainly vary but here are some potential ideas:

Weighted blanket
Heated blanket
Large water bottle (if applicable)
Comfortable socks (non-slip bottoms if possible)
Fuzzy blankets
Comfortable slippers
Pajamas
Sunglasses
Fancy heating pads
Fun and inspiring stickers
Migraine hats (if applicable)
Large tote bag or backpack
Gift cards to their favorite stores
Gift cards for a massage or cleaning service
Motivational mugs or artwork
PICC line covers (if applicable)
Small fans
Books
Games they can play lying down
Art supplies
Smart watches
Favorite movies

See our Helpful Items section for more ideas and examples!

Why can they go from feeling okay one day to feeling so sick the next?

This is a great question and is something that can be very confusing for our family, friends, and so many others in our lives to understand. It is also important to note that as confusing and difficult as it is for others in our lives, as it can require more patience and compromise, it is even more painful for individuals in our community. Individuals in our community are susceptible to what we refer to as "flare-ups." Flare-ups can vary in severity and length and refer to temporary periods of time when our underlying symptoms and conditions can worsen. What causes symptoms to flare-up can vary from person to person, but some of the most common POTS triggers based on a recent poll include illnesses (like viral infections), heat, menstrual cycles, physical activity (amount varies), certain foods (varies), poor sleep, and stress. Sometimes when we tell individuals that stress causes flare-ups, they immediately jump to assuming it is because POTS is caused by anxiety or another psychological cause, but this is not the case. Instead, stress is quite hard on our bodies, our immune system, nervous system, and can increase inflammation. Stress contributes towards many diseases, disease processes, and is a common trigger for individuals with autoimmune conditions. Click here to learn more about some proposed causes of POTS. For these reasons, it is extremely important for individuals in our community to reduce stress. Because of the varied flare-up triggers, and the importance of pacing, it is possible for individuals in our community to have a low symptom day, overdo it physically, and then experience a flare-up the next day where their condition may temporarily worsen; they can experience very difficult symptoms. As you can probably imagine, this is very hard for individuals in our community. Imagine that with each activity you engage in, you have to balance how much you can do, knowing that if you overdo it, stay out in the heat for too long, or eat certain triggering foods, you will feel very sick the next day or perhaps days later if there is a gradual cumulative effect. What is even harder is that as POTSies often navigate a great deal of grief when this happens, family and friends can become frustrated, upset, and even begin to question if they are faking their symptoms. Please know how painful this is for the POTS community and, honestly, the chronic illness community as a whole. We can assure you that the last thing anyone in our community wants to do is miss out on events, spend more time on the couch or in bed, or be unable to attend events they were looking forward to. It brings up a great deal of added grief for many. Your understanding, patience, and compassion can go quite a long way! To learn more about flare-ups, click here.

My loved one developed POTS after a COVID-19 infection; why is that?

First, we want to speak to how painful this can be both for loved ones and for individuals in our community. Many in our community developed POTS after COVID-19 infections, as long COVID, and it can be an extremely isolating and difficult journey at times that we want to speak to and recognize. We see you, we see your loved one, and we see what they may be navigating each day. Viral infections have been known to cause approximately 50% of cases of POTS, and there are a few theories and hypotheses specific to proposed mechanisms. To learn more, please see our What Causes POTS section and COVID-19 Infections section.

My loved one developed POTS after receiving a COVID-19 vaccine; why is that?

We want to first apologize that your loved one had an adverse reaction to the vaccine that led to the development of POTS. It can be very painful and upsetting when something you hoped would be helpful to protect your loved one ends up causing them harm, and you aren’t receiving the necessary support, answers, or acknowledgement. Unfortunately, we do have individuals in our community who developed POTS after a reaction to one dose, two doses, or booster doses of the mRNA vaccines. Although we do view them as very important public health tools that have been effective in reducing COVID-19 morbidity and mortality, we also must recognize that like with anything foreign we introduce into our bodies, there can be risks. Making blanket statements that vaccines are always safe is not accurate, as other vaccines have been shown to trigger POTS in some, specifically the HPV vaccines (Tomljenovic et al., 2014). Vaccinations can trigger the development of POTS for some. Although the exact underlying mechanism is still unclear, researchers believe there may be an autoimmune component for some (Reddy et al., 2021). Researchers do believe that immunological stressors can trigger POTS, so this may provide us with some insight. It is important to note that despite this known link, many in our community are still able to receive vaccinations safely, though they may experience some temporary flare-ups in their underlying conditions. We suggest working with your loved one’s team to develop safe protocols that can be followed, if receiving future vaccine doses to proactively prepare for potential flare-ups, and to discuss what vaccines they feel are safe for your loved one to receive. Although vaccinations are known triggers, viral infections are as well; therefore, it is important for their medical team to assess the risks and benefits associated with each decision, and discuss those openly with you and your loved one. To learn more about what can cause POTS, please see our What Causes POTS section.

Are there helpful treatments available?

Yes, there are, as both non-pharmacologic and pharmacologic treatments may help with symptom reduction. Although there is no current cure, and access to some of these may be limited, a lot of research is ongoing. We do hope we continue to learn more and that all of this added insight helps us get closer to developing even more effective treatments, and ideally a cure! To learn more about some of these, please see our Managing Symptoms section.

Can my loved one still travel?

Traveling may look different for them, especially because of COVID-19 and the importance of taking precautions, but yes! Traveling is certainly still possible. See our Traveling With POTS section to learn more about this and helpful tips/tricks specific to traveling.

I have noticed this has been hard on them emotionally. How can I help?

Unfortunately, there is a significant amount of grief that can be experienced, which can also contribute towards depression or other significant challenges and emotional pain. We would recommend learning more about the grief individuals in our community may navigate, located here, and our section specific to suicide and crisis entitled “I’m Really Worried About Someone,” here. Other sections within our mental health section may also be helpful to read through! Outside of learning about their illness and supporting them, it may also be helpful to encourage them to see a mental health professional. We do believe that therapy can be helpful for everyone for many different reasons! It can be helpful to have that added support on a regular basis from someone who isn’t a family member or friend. They may be able to help them process the grief, other aspects of what their experience with POTS has been like, and many other aspects of the journey.

I have taken my loved one to appointments, but providers dismiss them and our concerns; what do I do?

First, we want to sincerely apologize for any and all bad experiences you have had where either you, your loved one, or both of you have been dismissed in this way. Although we will say that this is quite common for individuals in our community, that doesn't make it ok or acceptable. We can’t normalize this and say it is ok, but we can offer compassion and empathy, reassuring you that we understand how painful this can be for so many reasons. Often, this is something referred to as "medical gaslighting." We have a section dedicated to medical gaslighting which describes what it is, various signs, and steps you can take to navigate it in healthy, beneficial, and constructive ways. We highly recommend looking at this section, and have linked it here. We also recommend looking for providers who are familiar with these conditions and who have been recommended by others within the dysautonomia community. See an earlier question above for some helpful tips and resources specific to this.

My loved one often tells me they are struggling with “brain fog,” and they can become much more forgetful or even have trouble concentrating when I’m talking to them. Why is this happening and how can I offer more support?

Brain fog is a very frustrating symptom that many diagnosed with POTS and other forms of dysautonomia may struggle with, and can present as more forgetfulness, difficulty with word finding, remembering small or large details/tasks, or perhaps they have more difficulty concentrating when you are speaking to them. The severity can vary, with some in our community experiencing more mild forms of brain fog, and others experiencing more severe forms. It is also important to note that the severity and presentation may vary from day to day, especially given the variability and potential for random flare-ups (periods of time where symptoms experienced may worsen). We can guarantee that as frustrating as it may be for you, it is even more frustrating and upsetting for individuals in our community who may be struggling to remember a multitude of different things. Examples might include: if they took their needed medications, if they locked their car door, what they need at the grocery store, or if they have an assignment due for school. Brain fog difficulties can bring up added grief and sadness, and your patience and compassion can make a significant difference. When being mindful of difficulties specific to brain fog, it may be helpful for you to write down important messages or notes, and even keep written reminders for your loved ones. Researchers are continuing to gather data and insight into why brain fog occurs for individuals with forms of dysautonomia like POTS, and what may help as providers consider certain medication options, but this research is still ongoing and what works for one individual in our community may not work as well for someone else. We recommend visiting our Brain Fog section to learn more, as the more insight you have, and the more support you can provide, often the better.

As with all of the content on our website, it is designed for you. : ) So! If you have other questions that you would like for us to be able to answer, although we can’t provide medical advice, we are always happy to immerse ourselves in the research and provide you with as much helpful information that you can share with your medical teams to discuss as is possible. So please don’t hesitate to reach out and let us know! You can do this by sending us a message on Instagram (link can be found at the top right portion of our webpage), or by sending us a message here.

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Awareness for POTSies was founded in 2021. This website was developed with love and a great deal of time and commitment to our community. When sharing any content we developed, we ask that you cite our organization appropriately, as a great deal of work made this possible!