5 Things Every Potsie (or Chronically Ill Person) Needs to Remember.

If you are reading this, you most likely live with some form of chronic illness. October is Dysautonomia Awareness Month. I have a form of Dysautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). I have written numerous blog posts explaining what it is if you would like to know more. But this year I am writing to those living with POTS. Yes, you! I see your silent struggle. I hear your broken heart when I am messaged by complete strangers and those who are close friends. I am in the fire with you. This is my heart’s desire for each of you in word form. It is meant to be specific to the circumstances you are facing. Not a general brushstroke but rather a raw, unfiltered message just for you.

  1. Your illness is not a figment of your imagination. It isn’t “just anxiety”. Although by nature, POTS throws you into fight or flight mode. So yes, anxiety does coexist within POTS. If your suffering was dismissed for years by the medical community, I hope you can find healing. It’s traumatic being tossed around from doctor to doctor. Especially when you continue to receive no answers. I know for many, that anger and brokenness remains. But the healthiest version of ourselves includes healing, forgiveness, and grace. Otherwise, we are allowing those who hurt us to live rent free in our mind’s.
  2. You are not worthless. Again, you are NOT worthless! It wouldn’t be better for your friends and family if you weren’t here. You may feel as though POTS has stolen your life. It has taken your ability to function normally. What you once loved to do is now only a painful reminder of your limitations. You are no longer reliable because POTS has a mind of its own. We beat ourselves up over this. Other people can do basic tasks. Why can’t we? Because we are sick, not because we are worthless.
  3. You are not alone. One of the things that helped me tremendously after being diagnosed was joining support groups. Making friends with others who completely understand the tumultuous journey you are on can help you in ways you never imagined. For the teens and early 20’s, they can feel even more isolated. They are watching their friends do normal activities while they find themselves confined to the sofa. I developed POTS at the age of 30. I had traveled, gone to college, gotten married, and had children. The younger Potsies are my heroes.
  4. Never lose hope. The moment we lose hope, we lose ourselves. Hopelessness has no exit strategy. Instead of remaining silent, expressing that hopelessness to a trusted friend or counselor can save you from falling deeper into the abyss of hopelessness. Every single time I begin to feel hopeless, I start fighting. I know staying in that space is dangerous and all to easy to justify. Chronic illness is not for the weak. We could easily justify our feelings of hopelessness. Show me a chronically ill person and I will show you a warrior. You are stronger than you realize.
  5. Embrace failure. Failure is the outcome of someone who has tried. I have fallen flat on my face so many times. But there is victory in failure. It means you are not giving up. You aren’t settling for the easy way out. It makes every small victory even more sweet. Sure, you have an incurable illness, but incurable illness doesn’t have to have you. It attacks daily. It can be relentless. But you know who else can be relentless? You! Never stop trying. Never stop researching. Never allow failure to define you. You aren’t the lump sum of your failures. Fall down seven times…get up eight. You are worth fighting for! Don’t give up! Your story is still unfolding. This is not the end.

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