ER visits – they’re never anticipated and for some, the time leading up to them is usually filled with anxiety, second-guessing and wondering if you should even go. Yet, the intense chest pain, dizziness and throat tightness all have you believing your heart is giving out and this could be it. They always tell you whenever you’re experiencing chest heaviness, pain and pressure, you should seek immediate medical attention. So you convince yourself it’s time to go to the ER, even though the last handful of ER visits ended up with the doctors releasing you and telling you everything is “normal.”
That’s POTS in a nutshell (with whatever else my body is dealing with that has yet to make itself known). I’ve learned that most doctors have no clue about this condition. The ones that do know something, don’t end up explaining enough about it. They can’t answer questions when you have them. They shrug their shoulders when you ask why something that’s supposed to be “orthostatic” is happening while you’re at rest. I could be sitting down on my couch and feel like an elephant is sitting on my chest, my heart is flopping all around and my throat feels like someone is on the inside strangling me.
While at the ER, I thank God when the doctor says all labs, ECGs and imaging are “normal,” but at the same time I want to scream. I want to scream because it feels like an entire war has been waged inside of me, but not a single soul can see it. It’s like that scene in Ant-Man when he’s running from the bad guy on the toy train set. To him, those moments are full of pure chaos and he realizes danger is unfolding inside of his pint-sized world. Yet, to his daughter and to all those living above it all, it appears nothing is even happening. That’s how it feels. Your body is pleading for help, but everyone on the outside is entirely deaf to your internal screams. I also want to kick and scream, because even with a diagnosis of POTS, I get asked, “Are you sure you’re not just anxious about something?” Really? Anxiety is a real health issue. I understand that 100%. But I have learned how to cope and manage my anxiety and I’ve never gone to the ER for it. Of course at the ER, the anxiety levels rise. But that’s not the reason I’m there and they know it – though they won’t admit it, because the truth is, they don’t know what is going on. The whole experience ends up being so frustrating and it will often lead you to second guess going to the ER at all, which is not how it should be. Occasionally, you will find the one doctor or that one PA who is willing to go “above and beyond,” and each will recognize that you’re in pain and realize you’re not just there for the (pardon my French), “hell of it.”
All of that being said, one of my biggest commitments I’ve made to myself over the last few months is to go to doctor appointments and ER visits always prepared. I carry a journal that includes every symptom I have felt since the beginning of this and every symptom that led me to sitting in their office or in their hospital bed. Without this journal, I couldn’t possibly remember everything. I’ve also realized how important it is to get doctors to focus on you while you’re speaking and not their computer screens. I understand I’m probably the 50th patient they’ve seen in a row, I understand how complex my case is and I understand how easy it would be to just write me off as a hypochondriac. But I know deep down what I’m dealing with is very real, very concerning, very frightening and I wouldn’t be there unless I needed to be. I could think of 1,000 other ways to be spending my time and my money.
Being your own advocate, which you’ve heard me say before, is one of the most important jobs you’ll ever have when dealing with chronic illness or any hardship in life, really. Your voice needs to be heard. Otherwise, you will be dismissed – unless you’ve somehow hit the jackpot of doctors right out of the gate. I cannot stress this enough – if you are unhappy with your level of care, if you feel like you’re not being heard or you just don’t have the kind of working relationship you expect with your doctor(s), it’s time to speak up and put yourself first. If you know something is not right, you do what you need to do. After all, this is your body. This is your health. This is your life.