Many of us in the POTS community have shared stories, posted websites, and pictures hoping to raise awareness during the month of October(the above picture is me sitting outside so I can watch my daughter play. Yes, I have to use an umbrella to shield the sun and wear compression hose. But that’s ok). Knowing October is Dysautonomia Awareness Month, we have made a more concerted effort to use our voices to advocate for this debilitating condition. Just this week I started going live on a POTS support and awareness page, and I have been blown away by the responses. I have heard story after story about regular people living pretty incredible lives and then…wham…POTS showed up. For many of us, we can remember the moment when POTS entered our lives. It’s like a crazy ex-boyfriend/girlfriend showing up out of nowhere and refusing to leave. I think is it incredibly important to raise awareness for this syndrome, but I also want to give a deeper understanding of what goes on inside a POTSie. Because POTS is not a common illness we spend much of our time trying to explain our condition to others. But, outside of the scientific definitions, there is a soul that needs you to understand a few things about us.
- Your support means everything. Many POTS sufferers have shared that their families believe they are making this up or treat them as though they are a burden. To be told “this is all in your head”, “just try a little harder”, or “you look too healthy to be sick”, is not only offensive it is heartbreaking. This is what causes many POTS sufferers to slowly begin to retreat from social settings and life. This is NOT my personal experience (except for the, “You don’t look sick enough”), but many are not as lucky to have a solid support system as I do. So, I want to speak for those who feel completely alone. This is a real medical condition that ranges in levels of severity. For some of us, the physical suffering is something we live with on a daily basis. We couldn’t make up these symptoms if we tried. Many of us have a hard time even putting words to what the symptoms are because they are so unusual. But, the common thread is this…we already feel at war within our own bodies, the last thing we want to do is feel we are at war with our loved ones too.
- Our physical pain and limitations create a mental battle like you wouldn’t believe. We fight every day to get up and live the best life we can. Sometimes that means we spend the day in bed, and sometimes that means we are able to function on a higher level and do semi-normal activities. But we do not know what level we will be functioning at until we wake up. Imagine that…never knowing what version of yourself you are going to wake up to. Throw stability out the window, along with any planning for the weeks ahead, because we are only able to know our itinerary for the day after waking up. Even then, POTS has a way of hiding around the corner and changing our symptoms by the hour. So, if we seem unreliable that is why. And we HATE being unreliable! Many of us have always been the kind of person you could count on. Mentally it is crushing when we feel as though we are constantly letting others down. I think I speak for most of us POTSies when I say, we are as annoyed by our inconsistencies as you are. The adjustment period of learning our new normal is extremely emotional. We have to mourn our losses, adjust to a new lifestyle, accept where we are, and then repeat those steps over and over again.
- We are not lazy. Sometimes we have to spend days in bed. Not because we are lazy, but because for some of us it is the only way to begin recovery from a flare up. We are not trying to sit around seemingly doing nothing. It’s quite the opposite! If we could have a POTS free day, we would be out of our jammies, compression hose, and our bed’s so fast you wouldn’t be able to keep up with us! We would go out and enjoy our favorite activities and truly appreciate them because we know what it is like to lose so much of life in a moment. In fact, I think you would find us far more invigorated to live life to the fullest. We appreciate the smallest of accomplishments because we know we fight for every step of progress we make.
- We are strong. Yes, by looking at most of us we seem weak, frail, and ghostly. But you have no idea how hard we have fought to be where we are today. You cannot judge us by our outer appearance. There is a much stronger person inside that fights battles we pray you never have to fight! Yes, we all have our moments of weakness and despair. But underneath there is a warrior. Think about it…fighting a battle that you seemingly cannot win, moving forward when the odds are stacked against you…Now that takes strength. It is not for the faint of heart.
- We don’t expect you to fix everything. We know you cannot “fix” us. But, please don’t walk away because that makes you uncomfortable. Your friendship means the world to us. Sometimes, we just need you to sit with us. That’s it. We understand it is not easy, and it actually shows the strength of your character to stick around even when you have no idea how to act around us. Just because our bodies are whacked out doesn’t mean you have to be any different around us. We are still ourselves, just a broken version physically. But, the greatest gift you could give us is your friendship and we will continue to give you the same in return. POTS doesn’t make us forget how to be a friend and for those who choose to stick around, you are AMAZING! I have heard so many stories of people walking away because they don’t know how to handle illness. I thank God every day that my experience has not been negative with friendships. If anything my friendships have grown stronger, but I know this is often not the case.
- We love you and know that living with someone with a chronic illness cannot be easy. We completely understand that this illness affects the entire family and support system. We carry guilt around because we do feel as though we are a burden even when we are constantly reminded we are not. We can’t help it. We are the broken ones. We are the ones who have to rely on others to get out of the house and keep up with housework. Significant others, parents, friends, we say thank you! You are warriors too! Your suffering in our suffering is not lost on us. Our desire is to walk free from this illness one day and repay you for every act of kindness and love you have shown us. POTS can seem to steal so much, but many of us have found gifts in the midst of the suffering. We appreciate every ounce of life we have. We appreciate and respect our loved ones for the support given to us. Many of us have grown stronger in our faith as we have battled something greater than ourselves. And most of us have found strength we never knew existed in us. We promise you, if we have the opportunity to be POTS free we will not forget these gifts. We will pass them along in sickness and in health. We want to live the best life we can. And we want to live that life with you!