It seems that those of us who suffer from chronic illness, especially those who have what are called “uncommon disorders,” are continuously put to the test and we must be our number one advocates for ourselves and for our condition(s). Physicians often wonder why patients resort to looking up information online. Well, it’s because most of the time we are left with more questions than answers and we are constantly made to explain ourselves even with a diagnosis in-hand.
I recently encountered two situations where I had to speak up and not let doctors talk down to me and make very bold statements, or speak to me as if all my symptoms stem from an undiagnosed psychological disorder. The first example is a physician who has no experience with Dysautonomia who decided to tell me, “just because some doctor put you on a table and tilted it 70 degrees, doesn’t mean you have POTS. Are you experiencing any stress at home?” It took me about 10 seconds to reply, because in the past I would reply with a simple “no.” This time, I wasn’t going to let it happen again. I looked right back at him and said, “That ‘some doctor’ you’re referring to is a Cardiologist who performs tilt table tests probably 10-15 times per week. How about we let the medical professional with the experience in that area make the diagnosis. I am not here for you to question my already-existing condition.” Surely, that wounded his pride a bit, but I am sick and tired of doctors thinking they can speak to me whichever way they please and not focus on why I am seeing them in the first place. Much of my doctor visits now revolve around the varying symptoms I experience and the different abnormalities that pop up along the way to ultimately rule out other problems and find the root cause to this. I am also tired of having to explain that this is real and not something I decided to fabricate in my head. This continues to happen even with a diagnosis and even with abnormalities that show up on lab work. How can someone fake this? I consistently have to defend myself.
The other physician I recently saw made an extremely bold andfear-instilling statement about how my POTS could “really be vertigo,” but inthe same sentence also mentions that my symptoms “could be the start of adisease process” in my body, “including cancer,” and perhaps my body is “just ultra-sensitive. Only time will tell.” Though he could be correct – but I sure as hell don’t want him to be – it’s unsettling for many reasons. The biggest reason it’s unsettling is because I am not sure who makes a statement like that, but then does nothing to help me. Thank goodness he is not one of the key players in all of this, but it still grinded my gears and sent my mind straight downthe dark rabbit hole of negative thinking. I started to ponder, “What if I really am ‘on my way out?’ Is this what dying feels like?” Then I picture myself on my death bed saying goodbye to my husband, my family, my friends and my pets. It’s not a good place to be and it’s certainly not a good place for your mind to stay. The underlying “unknown root cause” of everything I am going through really messes with my head some days, but I try my very hardest to push through it. However, it’s not easy by any means.
That leads me to this. I recently spoke to some people in a POTS support group I am involved in online and asked them how they handle the “runaround” with doctors along with the negative thoughts that tend to accompany this syndrome and the overall unknown. Here are some of the suggestions people gave that I found helpful and may try. You may find these ideas helpful too:
- Get back to basics: What do you find fun? What was something fun you did as a child? Maybe it’s bike riding (if you are able), painting, drawing, watching your favorite childhood movies, etc.
- Coloring: Purchase adult coloring books and start coloring daily. If you start thinking negatively or worrying, pull out your coloring book to distract your mind.
- Reading: Start reading intriguing books that temporarily take you out of your own world and put you mentally somewhere else.
- Mindfulness: This is something I struggle with, but many people have recommended this to me and say it works very well. I have heard the apps, Headspace and Insight Timer, work exceptionally well.
- Affirmations: Take ten minutes out of your day to write affirmations. I recently read one in a book I am reading that goes: “I ________ (your name) am relaxed, comfortable and healthy.” Affirmations are difficult to write at first, because you don’t necessarily believe them or feel that way, but it’s about training your brain to think this way. I have spoken with people who swear by affirmations. The Life Coach that I am working with also helps me with this and gives me ideas of different ones to try.
This all being said, I know it’s hard and I know it’s a daily struggle. Sometimes the fight is so exhausting that you wonder what you’re even doing anymore. Sometimes it’s so hard to understand why it’s this difficult to fight for the care your body needs and deserves – but keep on fighting. Keep on pushing through. You’re important and you deserve nothing short of the best<3
The Chronicles of Chronic Illness 