Parenting With POTS
We developed this section because we know we have a number of parents in our community who also navigate POTS and other co-occurring conditions. If you are reading this, it is likely you may currently be a parent with POTS, pregnant with POTS and thinking about what it will be like to be a parent, or perhaps you want to know more about what parenting with POTS might be like. We hope that this section gives you the added support and guidance you are hoping for, and we will continue to add to it.
When we envision what it will be like to be parents, most of us are told how stressful it can be, how beautiful it can be, and how life-changing it can be, but no one prepares you for what parenting is like with a chronic illness like POTS. We may have imagined being able to attend all of their soccer games in the scorching heat, running after them at the park, or having endless amounts of energy to cook multiple different meals for them in one day. Perhaps we envisioned ourselves being able to work while also helping with carpools, or hosting most of the playdates with their friends. We don’t talk about how painful and difficult it can be to have what we envisioned not be our reality, and often the change happens suddenly. Perhaps the change happened prior to being a parent, or perhaps you were already a parent prior to getting sick. What is important to know is that you are everything your child (or children) needs. They love you for you, and not for what you can do for them physically. You are their world, their everything, and there is no one else out there who could do a better job than you. Not your neighbor who seems like they have an endless amount of energy, not your cousin who talks about how much they are able to do with their children, and not that person at the grocery store who is questioning your every move. We know that sometimes the self-doubt can creep in so we want to reassure you; you are everything they need and more, just the way you are.
This being said, we also know how difficult it can be to remember this and believe this, especially when your children are younger. When they are younger and don’t quite understand, and perhaps get upset with you for not playing with them, it can be very challenging. We hope these tips below give you the added encouragement and support you need. You will see that we have an “8 Things To Remember” section below (which we will gradually add to), in addition to the added support sections based on the age of your child/children. These age-based sections will be completed by October 1st, 2025 but we will continue to add to this section regardless.
8 Things To Remember
1.) It’s ok if you need to take breaks to rest so that you can prioritize your health and well-being; it is important to pace yourself and is quite admirable. It is healthy and important for your children to see this and watch you care for your body in this way. When we watch our parents push themselves unnecessarily, not taking time for themselves, we too may feel as adults that self-care looks like pushing ourselves too hard, or perhaps we don’t know what self-care is. Seeing you take care of what your body needs may empower your children and motivate them to do the same, as they hope to model after you.
2.) Comparing yourself and what you are able to physically do for your children to that parent down the street, or perhaps a relative or friend, is unfair to you. Look at how hard you are working to be there for your children in every possible way while also navigating this very difficult road. Looks can be deceiving. Although others may be able to do more than you physically at times, there is no one who can love or care for your child better than you, even if it doesn’t feel that way at times. The love your child has for you is unlike the love they can have for anyone else. You are their world.
3.) Your children will not remember how long you could stay at the park, or if it was easier to play inside most days. They will not remember if you could play soccer with them, watch from inside, or watch from a chair outside. They will not remember how much energy you put into cooking meals for them or how fancy they were. What they will remember is how much you loved them, how often you hugged them, how often you cheered for them, and your presence. They will remember when you told them how proud you were of them, how you would always be in their corner, and if you took time to get to know them. What they will remember is not dependent on your physical strength, or physical abilities, but rather your love for them. No illness can ever take that away from you, not even POTS.
4.) Cereal for dinner is perfectly acceptable on those low spoon nights, without judgment. Your child or children will probably look at it fondly as an “oh yay, cereal for dinner!” as opposed to something negative they will judge or criticize you for. If you are feeling judgment or criticism, notice where it is coming from. Often, we are harder on ourselves than those around us.
5.) Offer yourself a significant amount of compassion when difficult emotions surface, related to not being able to do the things you may have envisioned with them. Sometimes our inner voices can be extremely critical and harmful, as we tell ourselves things we would never even dream of telling someone else in the same situation. This doesn’t always have to be the case. We can practice viewing ourselves and speaking to ourselves in more compassionate ways. There is always room for this growth, development, and healing.
6.) There is no shame in asking for help, as we all need help sometimes. Good parenting is not defined by how little or how much help we need, it isn’t. Often, it is the parents who ask for help who are caring for their own needs, and by extension their children’s needs. You don’t need to do this alone and we weren’t meant to. It often takes a village. It is important to also remember that what help looks like will appear different to all of us, as we all have different needs. Perhaps getting help to you is making sure you have time to meet with a therapist regularly; perhaps getting help to you is having a relative watch your children so you can take a nap; perhaps getting help to you is having a friend drop off some meals when you are in a flare-up. Whatever it looks like, as it will certainly vary, is perfectly ok. Please, please, ask for help when you need it.
7.) Write things down whenever possible, stay as organized as you can, and try to meal prep and/or cook in bulk to save time. Slow cookers (except with MCAS) and instant pots can become our favorite sidekicks. There are so many ways to make tasks more manageable so they consume less of your energy. This sometimes means cutting corners to save time and save spoons- nothing wrong with that and it is actually encouraged.
8.) Please remember that you are an inspiration. Navigating an illness like POTS can be challenging enough as it is; having the opportunity to raise a child (or children) at the same time can be difficult, and extremely rewarding. The love you have for them is beautiful. The way you show up for them is beautiful. The breaks you take to care for your body are beautiful. You continue to do everything you can, reasonably, which in itself is inspiring.
