Important Reminders
We wanted to share a few important reminders below that we hope will help you better understand what the person you care about with POTS is experiencing.
Dysautonomia warriors are used to minimizing their discomfort. If they are sharing something with you, it is very possible that it is worse than they are making it out to be, as they may be concerned about being dismissed or burdening you. Feeling like a burden is something that many living with chronic illness warriors and individuals with POTS struggle with. Dismissing their truth when they are already minimizing it is another harmful piece.
Many living with dysautonomia can feel like a burden. Reminding them that they are not a burden and are needed in this world is one of the loudest ways you can love them.
Your loved one may struggle with their mental health, but this does not mean that dysautonomia is a mental health condition. Individuals with chronic illnesses, including forms of dysautonomia like POTS, experience many overwhelming changes and losses that would be challenging for anyone to navigate. This is also the case for individuals struggling with other chronic illnesses.
Showing up for your loved one can help this journey feel and be more manageable. Support from loved ones can be comforting and protective.
When in doubt, ask them. It is likely that they would rather you ask than assume that something would be helpful or unhelpful.
It is very possible that 99% or more of what they experience you are not able to see. It doesn’t mean it isn’t real. There is considerable evidence to prove that it is very real. Please trust what they are telling you, even if you can’t see it or understand.
You can’t support your loved one if you are not supporting and taking care of your needs too.
Their grief is likely to bubble up at random times throughout the journey. There may be unexpected reminders like old pictures, flare-ups, or other reminders of losses that can be triggering. Your patience, kindness, and understanding will make a difference.
POTSies are incredible humans with many gifts to offer this world. They have bright lights that are a blessing. Despite this being the case, the journey with POTS can leave many questioning their worth. Reminders of their beauty and worth can be helpful, in addition to normalizing the need for extra support when they are struggling. There is no shame in getting help and asking for help when it is needed.
This journey can be difficult for everyone, but our goal is to help make it feel less overwhelming and more manageable. Communicate openly with your loved one, please include them even if you know they can’t attend an event, and move through this journey with them. Our hope is that it won’t always be this difficult, especially with more research that is ongoing.