Another week, another admission this time I ended up in the ICU directly from the ER. My once super low blood pressure, is now insanely high, some from unknown causes, and a little from the stress and anxiety these providers have caused that could be simply avoided by talking to me and asking me questions.
Assumptions in health care are so scary that unless you are on top of things, misinformation can get carried into your medical chart and that is a Herculean task to have amended or changed in your chart. Filing a grievance sounds right, but that too doesn’t get handled well, and you only end up with a stupid form letter to say that an investigation was done, changes were made, if necessary, and internal actions “may have been taken.”Not what you want to hear after putting your total heart and soul into your concerns at the time- all while dealing with your current brand of sickness.
Medical trauma is real. When a bad situation repeats itself or you feel you are being gaslighted and begin to feel “crazy”, it’s not ever your finest moment(s). I tend to get loud and teary. Apparently this is something that needs to be not happening around others. I clearly mean no hard, but I struggle to put my words together, thus creating more stress on me, more anxiety, and the cycle continues until total breakdown, and now you are the looking and sounding like the crazy one, not the provider who started it. My biggest trigger is when a brand new provider believes they know and understand my medical history based off of oral report of the previous provider, or the written report that is often inaccurate, or just assumptions.
Secondly, is when a new provider begins to unravel your medical history by distrusting what other providers (mostly specialists who have spent months or years creating said plan, treatment. medication). Please trust your patient, she knows that most about the symptoms, home meds, and history, especially whats not mentioned in these reports. Once this trigger is let loose within me it seems like nothing can put it out except finding a way to find an ounce of truth and faith in someone and pray that continues. Everything else gets blocked out, even new good stuff. This is really hard to do and I lose my dignity and end up losing people who were cheering me on because they don’t understand why I get so upset. I simply want to be kept in the loop about what is happening, offer my input about my personal history, and overall, be BELIEVED!
This is a lesson I really need to master, my reactions are uncontrollable and getting worse at this point. I look forward to working with my therapist to help moving forward. Getting upset in a way that makes you look even “crazier” doesn’t help when you are trying to be believed. Unfortunately, providers don’t remember medical details about you, but rather the way they were treated and your clinical presentation . I strongly believe that providers should not be exposed to abuse and deserve respect, but sometimes that respect comes in the form of, I respect you so much, I’m showing you my vulnerabilities so you can help me. Crying for help is oftn seen as a weakness or being disrespectful, we need to normalize anxiety and stress responses and recognize they are signs of needing not just medical information, but support.
I did something different today in the height of my “emotional diarrhea” I stopped and asked for my emergency anxiety meds. I made the decision, it was not asked of me, or recommended. Why can’t providers who know you have a long standing diagnosis of anxiety offer help instead of ignoring or just repeating, “you need to calm down- because that does nothing!” The best providers, look into this and provide support that actually helps and builds the broken trust. I am not a “pill popper” when things get rocky, but I sometimes need the chemical impact of something when I am past the point of no return. I am not ashamed for asking for my meds and wish someone would have asked me if I wanted them earlier. It is time that we normalize getting help from many different corners from are health care providers. This is different than writing a random script of meds and tell a patient, “This could help, get it filled any take it. This is about changing the culture and acceptance of the normalcy of needing to getting help. Instead of saying, “Where are your anxiety meds- you should take a dose,” Asking about what srategies the patient may want to try right then, right now! Then introduce the idea of meds. Patients should never feel bad about taking something, but rather encoraged that they are finding a new tool for their toolbox to help with the situation. When a patient utilizes a tool, even/especially asking for anxiety meds, applaud them and support their decision.
Also, this doesn’t even scratch the surface of your medical history not being believed, in the sense of, “there is no way you have all this wrong with you.” or “but you don’t look that sick, or are you sure you really have this disease/ problem? A good example of this is the never ending oxygen question. Good meaning providers say things like your stats are great, why are you on oxygen” let’s take you off and see what happens( or worse they play “games” and try to discreetly turn off my oxygen just to prove for the 20 minuets it usually takes for me to notice, I was okay.) Two things automatically put in panic mode- you are not the specialist that prescribed and continues to provide documentation of the need and you are correct, right now I look like I might not need it, but you are not seeing me at a time, when it is my very lifeline. Trust me if I could get rid of it, I would be first in line. I always seem to get so close to turning the switch, but then an infection, trigger, or bad day gets in the way. The second is being called out on poly-pharmacy (essentially having conflicting medications or being told that some of your medications are not necessary. I do not like/want to take as many medications as I do. I hate it actually. I also have a lot of medication allergies or conflicts with certain, more mainstream meds. The creation of a medication list and regiment is constantly evolving and improving but a 3 day hospital stay in not the time to have hospitalist who meets you for less than 15 minutes or a couple of days to be making the changes or telling you the conflicts are the only thing wrong with you.
Trust is such an important element in the medical world. Providers need to meet their patients where they are in this continuum of ability to trust their providers, especially when the patient makes known their past medical trauma and trust issues. When a calm, outgoing, pleasant patient, suddenly changes and is flying off the handle and falling apart. The correct answer from the provider is not to escalate the issue, but find a way to tap in to whatever he/she is able to do to reintroduce trust. Providers always need to leave just enough space for the patient to find and react to the nugget of trust created by the provider so that trust level can grow.
This can look many ways, but should never look or sound like a threat or saying you need to calm down. Build and rebuild the trust each time you meet, but especially in these moments of possible hysteria or uncontrolled anxiety and please, treat the anxiety as a real medical situation, offering real solutions such as breathing techniques, supportive questions or thoughts that help change cognitive thought patterns. Overall, validate the patient’s feelings, behaviors, and thoughts, as exactly what they are, REAL!
Providers, be the change! Be the person who shows up for a person dealing with new or old medical trauma and shows signs of anxiety from it. Applaud successful mindset changes or choices to help make it difficult to navigate through the chaos. Gently offer suggestions and above all else, DO NO HARM! Harm may look like telling someone to simply calm down, embarrassing a patient by telling them they are being ridiculous and out of line, treat the symptoms of panic and anxiety with love, support, your expertise, and most importantly with time! The last thing I want to hear in the midst of a medical trauma being developed, “Is I’m quite busy and/or there are other patients other than you! I promise you, we are painfully aware that you, as a provider are already stretched too thin, but please know taking even 30 seconds to meet your patient’s emotional trauma will lead you to a much better encounter or appointment. By the way, nurses are amazing at this!
