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The POTS Paradox

par·a·dox noun: statement that is seemingly contradictory or opposed to common sense, and yet is perhaps true.

I am sure you have heard phrases that don't make sense because they appear to be contradictory. Like how can I do less and get more done or how can people spend money to make money? How about people with chronic illness being told that that they don't look sick!??! Even so much more then with people with POTS. We can have system failure, uncontrolled blood pressure a resting heart rate in the high hundreds or down to the 40s but we just don't look "sick". What does that even mean?

Me not looking sick but also not feeling well

If you've read my previous posts, you will know that this all started in August 2009. It was sudden, scary and truly felt life threatening. I sought answers but imagine my dismay when provider after provider (term used to include medical professionals such as Nurse Practioners, Doctors and Physician Assistants) and ER after ER dismissed my claims. Some even refused to order tests or did so reluctantly after I pressed. Many of these were male doctors but I will say that they are all not bad. I have had some great experiences during this journey and was actually diagnosed by male doctors. But male doctors were almost always the ones to do the dismissing.

It could be just me, because I haven't taken a poll or anything, but it seems like providers are trained to find level 5 of said illness and ignore levels 1-4. More reactive instead of proactive as well. I dunno. I can walk, you're fine! I can talk, you're fine! I can smile, you're fine! Your clothes match AND you put on make up?!?!? Get outta here you are surely fine. I guess sick looks like me dragging my leg behind me in four pieces, while not bathing and fainting with a fever of 200° F. However, if your blood work doesn't support the one thing they are looking for then this is all in your head. Odd that you have to fight to provide that you aren't having a mental break down as much as you have to prove that you are havine one. That is a whole different paradox.

definitely not well but trying to convince myself that I am. Not wanting to look sick

I don't know when the provider doesn't know what is ailing you that they pull the, "it's all in your head", card. You are labeled an attention seeker, a drug seeker or just wasting time. I get it, in a way, because there are people who do these things. However, POTS patients just want a hit of saline to raise their blood pressure and not faint. If I can put it like that. I also have taken medical billing and saw the other side that generates horrendous paperwork and puts limitations on the providers. They get tired of having requests denied and writing essays to justify why patient X needs this drug to live. If you don't have something glaringly obvious which will warrant approval for further testing, that 15 minutes is not enough to diagnose you. If you aren't dying, the ER will pat you on your head and throw your discharge papers at you on the way out. POTS patients seeking answers and saline. My last Neurologist was amazing but went to Medicare and Medicaid only because my private insurance was bugging him for the 1-2 hour appointments. He didn't just do it for me, but for all of his patients. That could be another paradox.

Either way, the chronically ill patient is the loser. I have encountered providers who are pusher men. However, if you refuse to be drugged to have the issue masked instead of corrected, then you (the patient) become the problem. I don't want to be drugged. I want to know why I am in pain, why I have near syncope, why my BP is crashing and rising, why my vision goes black? I know POTS doesn't make sense and you can literally have a problem with every system in the body. Yes, things need to be ruled out because there are other illnesses that mimic the same issues that people with POTS have. However, once the big bad things are ruled out the next jump shouldn't be a psychotic episode by default. Again, I need that saline but if I go to the ER asking for saline then you are really labeled as crazy. Or the dreaded, you don't look sick. This has become a trigger for me because it can cause me to spiral into a place of, not again. My once solidly pleasant countenance devolves into anguish and tears. Tears of anger because it took me a year to get in here, a $30 co-pay, a day off work without pay = time wasted.

What needs to change. The constraint on the provider's time and the paperwork denials by people who deny just to keep down costs. Patients are people who need answers and if people can switch places, even in their mind, they would hope for better care. People who aren't so quick to dismiss but to listen because you may actually learn something. I consider myself luck because I work, I have support and I am happy. However, there is no mistaking that I do suffer...daily. I just choose not to dwell on the can't and try to focus on the cans. My mind is fixed on God and that gives me immense peace. I need all of my energy to focus on the positives in my life. You don't look sick...but I am.

Until next time


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