POTS Questions
We will answer a few more questions that you may have here, that perhaps we haven’t answered in other website sections. If there is something that is missing that you are looking for, please reach out to our team here.
Outside of your organization and website, where can I go to learn more?
There are 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.
Is research being done to learn more about POTS and how to help those with POTS?
Yes and this is encouraging; thankfully, many providers are working tirelessly to help individuals with POTS through their research efforts. Quite a lot is being done, but there is still always room for more research. To learn more about research studies that have been published, see our POTS Research section.
Will POTS negatively impact their career and other future 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 certainly some who require disability assistance. As a syndrome, POTS presents differently, the severity can vary, and co-occurring conditions may also contribute towards the impact POTS 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. With proper testing and access to treatments that can increase their daily functioning, they may achieve the symptom reduction and relief they need to pursue the paths they envision for themselves, even if there are changes.
It doesn’t seem as hard as they make it out to be. Are they just being dramatic and making it worse?
One of the 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 sick when physically they look fine to you or others. 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 people 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, or less, 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.
Are they still able to travel or go on vacations?
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.
What can I do when medical providers dismiss them during appointments?
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. 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. Click here for resources that may help.
I’ve noticed that they have been more forgetful, not remembering what I’m saying, and they tell me it is brain fog. What does this mean and is this common?
Brain fog is a frustrating symptom that many diagnosed with POTS and other forms of dysautonomia may struggle with. It can present as more forgetfulness, difficulty with word finding, difficulty 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 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 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. 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.
My loved one with POTS is very young, 12 or younger. What are some supportive things I could consider saying?
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.”