Talk about a loaded question…”How are you doing?” Well, let’s see. How am I really doing? How do I want to be doing? Or how do we move past this question the quickest? It’s not you, it’s us. Yes, I realize that is the best breakup excuse ever. But genuinely, we mean it. We don’t want you to really know the amount of suffering we feel. And then there are times we wish you could understand. Especially those who are constantly challenged with questions from loved ones, friends, doctors and even strangers as to the validity of their illness.
For many, we do not want attention drawn to us so we choose to answer with the safe, “doing alright”.🙂 We also choose this answer because when speaking of our illness, it’s not exactly small talk. It’s complicated, confusing, and generally not a short concise answer. No pattern or general trajectory exists with POTS. Charts, research, and treatment are diverse and depending on who you ask, the answers will vary.
We dream of seeing a flow chart that illustrates a basic symptom/treatment plan. Words cannot express the relief each patient would feel if we had cutting edge research and data to share. Many feel a great amount of relief receiving a diagnosis. I was one of those who was ecstatic to have a name for my illness. I did not really prepare myself for the possibility of remaining sick. If we can identify it, we can treat it right? Well, right-ish…
Yes, there are treatments for the symptoms. For many, it does help with stabilizing the autonomic nervous system somewhat. While others like myself, cannot tolerate the current medicinal options. I do take medication. It is just not the go to meds for POTS. Pots is incurable so there is no known med to eliminate it. But, there are numerous meds used for symptom control. Many are multipurpose meds used for numerous ailments.
Back to the question at hand..”How are you doing?” For those who have to contend not only with receiving quality medical care but also with close family members, my heart goes out to you. I cannot imagine what that must feel like to have no support. I would guess it feels like a slap in the face every time the validity of your illness is questioned. The loneliness must be unbearable. This is not an illness that is meant to be fought alone. I encourage you to find a support group immediately. There are numerous ones on FB. If you cannot find any, I will help you find them.
For those who have an incredible support system, the answer is still complicated. I have an amazing support group. My family, friends and community have loved on my family from the moment I shared I was ill. I did not share I was sick publicly for eight years. Only those closest to me knew I was sick. I did not have answers at the time. How do you explain something you cannot yourself understand? Even when a diagnosis was made, the ability to inform others was nearly impossible. I quickly found others who had POTS. I also worked closely with my doctors to stabilize and learn everything I could about POTS. This blog was birthed out of sickness. I felt sharing my story was the least I could do if it helped even one person get diagnosed and have hope.
Hope is something that is easily lost with chronic illness. Imagine living day in and day out with no break while being sick. You never have the option of putting your illness down for awhile to catch your breath. It is with you 24/7. It’s the psycho ex-girlfriend/boyfriend that you just cannot get rid of. It is with you when you rise in the morning, when you bathe, when you eat, when you work, when you raise your children, when you rest, and when you go to bed.
Here is how we really are doing…we are fighting daily a battle we never expected fight. We are as irritated by the unreliability of this illness as you are. We hate that we cannot make plans months in advance. Our heart aches when we have to back out on plans at the last minute. We feel like a burden because we know much of the time plans are contingent on whether our illness is bearable that day or not. We beat ourselves up because of missing our children’s events. We feel like bad parents. We hate that as a spouse, we are not pulling our weight much of the time. We desire to be with you.
Finally, here is what we want to say to you…”Thank you!” For those of you who have loved us unconditionally through this insane journey, we thank you from the bottom of our hearts! Thank you for helping take our children to school. Thank you for loving us as though we weren’t sick. We don’t want to be defined by our illness even though much of our life revolves around it(whether we want to admit it or not). We appreciate your love, kindness, and encouragement far more than you could imagine. We want to be better! We are hopeful a cure will be found. But you, you give us one of the greatest gifts of all…yourself. Thank you for not giving up on us. Thank you for standing or sitting with us when things look bleak. Thank you for being you. And how are we? We are doing our best to be our best. We are hopeful there are better days ahead. When life’s storms head your way, know we will be there to return the favor!