I seem to be caught in this vicious cycle where I go to a new or existing doctor and I can tell they’re not 100% engaged or informed about my illness. They usually end up contradicting what previous or existing physicians have said and I leave with more questions than answers. Then I get home, still emotional and confused, and start looking up information on good ole’ Google. At this point, I have officially spun out of control and I’m heading down the deep, dark hole of health anxiety.
I often get told, “trust your doctors, not what you read online.” Though I agree with that statement and obviously, people should be listening to their healthcare professionals; my biggest issue with this advice is that I wouldn’t be Googling my condition or seeking more information about it if I ultimately felt like my healthcare needs were being fully met and all my questions were being answered. I have been told things like, “Your Dysautonomia could be the beginning of a disease process in your body and we just need to wait it out and see what happens.” I have also been told of several conditions that could ultimately be causing my POTS; however, when I ask what tests need to be done to confirm, the response is usually, “Well it’s a bit difficult to test for, because…” So I end up going on a trial of more medications to see if it helps or if I will be left yet again with a ton of question marks.
That leads me to the elephant in the room: chronic health anxiety. This is not to come off dramatic or exaggerative, but the times in which my POTS symptoms (or whatever symptoms they are, as no one can seem to confirm or deny if they’re all POTS-related), send me to the ER – it often feels like I am expiring and expiring quickly. I think in my head, “what could feel this serious that it warrants me a trip to the ER, but then turns out to be ‘nothing’?” This is not to be mistaken as me not wanting things to be okay. I am obviously thankful they don’t end up telling me I have some life-threatening problem, but I am also left feeling so isolated and confused. So it’s back to researching and to be honest, this causes more stress than anything. Thus, I wouldn’t recommend it to anyone going through a health situation that has not yet been entirely sorted out unless you’re looking for information pertaining to your already diagnosed condition. Basically, the unknown and not fully being in–the–know with your own body to the point where even the medical community shrugs their shoulders when you speak…sets me into panic mode and I start to believe they’re missing something and that they’re missing something big. And though they haven’t pinpointed exactly what is going on behind the scenes, I have to remind myself that I’ve had extensive testing done. But in my mind, they haven’t done enough. Anxiety creeps in. I start to think of all the things this could be in correlation to and what could potentially happen in the future as a result of what is currently going on. My mind quickly spirals out of control and I am left feeling even more uneasy than I was prior to visiting the doctor or the ER.
As if being ill with something chronic isn’t enough, not knowing why you’re ill (because after all POTS is a set of symptoms classified as a syndrome), consistently brings on added stress and worry over the condition of your body. Anxiety is a very real struggle. Anxiety can sweep the rug out from under you and laugh in your face when you hit the ground hard. A new symptom will pop up and I immediately get frustrated and upset and ask why the doctors haven’t been able to get a handle on this. Afterall, they’re not the ones physically going through it.
Fortunately, I have had the opportunity to work with an incredible Life Coach over the last year who has really helped me overcome some of my anxieties. I am by no means perfect or have it all under control, but it helps to have that support on the really tough days. I am also fortunate to have a very loving and supportive husband, family and friends who tell me constantly that everything is going to be okay. Though it is hard to hear sometimes, I try my best to understand that they’re coming from a genuine place and ultimately, they want to see me get this all under control so I can start to feel somewhat normal again.
My suggestion for anyone struggling with health anxiety or anxiety in general, is to first know you are not alone. In addition, there are various resources out there to help you and people out there willing to listen. Though at times there seems to be a very dim light or no light at all at the end of this winding tunnel, you will come out the other side. You will get your answers. You will find the treatment that works best for you. You will get to where you need to be. Believe you are a warrior and you will make it through these challenging times.
The Chronicles of Chronic Illness 