Why I Am ‘Tearful’ and ‘Distressed’ at Medical Appointments
Clinician notes from my recent doctor’s visits have included comments such as “patient was tearful,” and “patient was in distress.” My initial reaction to reading these remarks was, “Oh, no. They are going to think I’m crazy and will blame my symptoms on anxiety or depression.”
I struggle with a fear of not being taken seriously. My concern is deeply rooted in the fact that my symptoms were dismissed for years before I eventually received a proper diagnosis. This experience led me to hide my feelings because I wanted to avoid being labeled as “emotional.” So, I would like my medical team to understand why I may be “distressed” or “tearful” during a checkup.
During some appointments, I display frustration that many medications to treat my symptoms are contraindicated for me. I become angry when I hear, “We are running out of things that we can do for this.” I know that my medical team has my best interests in mind and are doing all that they can. My anger is not directed at them but toward my own body.
I’m continually looking for ways to feel better despite being told on many occasions, “This is just how things are right now.” I often leave appointments feeling hurt and sometimes hopeless. I usually suppress my emotions until I leave the office. I try my best to stay calm as much as possible during appointments to avoid labels like “anxious” or “depressed” because I don’t want my emotions to cloud the bigger picture of my physical health.
Sometimes, I can’t conceal my emotions and my doctors see that I’m upset. I show my hurt and pain as I try to explain what I’m going through. I cry in fear of what my body is telling me. I find it hard to put my feelings into words. My scars are still fresh, and my wounds have yet to heal. When the body has gone through multiple traumas, as mine has over the past few months, it can easily get stuck in “fight mode.” I struggle not to wince or shiver each time someone touches me.
When I express emotions at appointments and it appears as though I’m in distress, it is because I am sick of being “strong” while holding it all together. I’ve learned that doctors won’t get the full picture if I’m quiet and behave as if I am “taking it well.” I know how hard it is to act like everything is fine — it can be more challenging than revealing my feelings. I cry because of the pain, both physical and mental, and the scars that remind me of recent traumas.
Explaining my health to medical doctors sends my emotional state into overdrive. Sometimes I fight back with anger. At other times, I become “tearful” and upset, or I hide my emotions until I leave the clinic. However, I realize that when I conceal my feelings, doctors are confused about how to treat me. If I develop trust with my care team, I allow them to understand my vulnerability and let myself communicate my emotions. Being “distressed” is not a sign of weakness. Instead, it is an indication that I am fighting my hardest.
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Comments
LauraAnn Matthews
True brilliance, Brittany! Thank you for dropping your guard for all of us thus assuring us that we are not alone. Quite simply thank you for being you!
Joni Powell
Well said, LauraAnn.
Brittany Foster
Thank you so much, LauraAnn. I really appreciate your words so much! Thank you for reading !
Greg Snyder
Brittany, you restate a recurring theme popping up throughout most of our collective PAH/PH journeys. You go on to blame its lingering effects for your residual anxiety, resulting in distrustful and guarded interactions with your providers:
"My symptoms were dismissed until I finally received a proper diagnosis."
This was my story as well. I wasted many years impotently swinging at--but not breaking--the PH 'Pinata'.
Lame diagnoses from pulmon-ologists hit all around the real problem. My cardiologist and I stumbled onto the truth. When I finally broke it, all the answers came flying out.
The catalyst was the Regional PAH center at UTSW in Dallas. The dedicated, interdisciplinary team finally set me right. I felt back in-charge (somewhat) of my own fate.
My anti-anxiety secret weapon is bringing my lawyer-daughter along on my appointments. She fills in all the potholes my old brain misses, and asks the tough questions which I should be asking, but don't.
Thanks, Brittany. You articulated what several of us have gone through. We appreciate your introspection.
Brittany Foster
Thank you so much Greg. I am glad that you are getting the care that you need from a center that you seem to have trust in. That is so important ! Glad you also have a daughter who goes with you to appointments. If I didn't bring my mom or sisters with my to appointments there would be so much information that I miss!
Donna Ortiz
When I was initially diagnosed, I had gone to the pulmonologist not knowing what to expect. When he started explaining to me what he thought I had, I could feel my eyes starting to water. He says to me "Oh no, you're not going to go into cry baby mode are you?" Then he proceeded to tell me that he hoped I had good insurance. Did not give me very much info, just made me an appointment with a cardiologist. I guess he thought he was being funny, but I was not amused.
Brittany Foster
Donna,
I'm so sorry that interaction with a professional happened. That seems really insensitive and I hope that the doctor who treated you that way learns that that's not okay to talk to patients that way, especially when you are in such a vulnerable position! I have had my share of "dropping" doctors because of various reasons and the big one was because I wasn't taken seriously and many of my symptoms prior to diagnosis were pushed to the side. Advocating for yourself is so important ! Let that doctor know how you felt, even if you have to put something in writing to get your point across. You deserve to be taken seriously and treated with care and compassion.
Wendy Olson
Physician answers to my PH diagnosis were aggressive weight loss, high protein, low carb diet (but no one gives me amounts of each) and adding another diuretic, and use your CPAP. Cardiology takes care of PH where I live and I asked for a referral to a PH Clinic in a larger city but was told to see another cardiologist who has an interest in PH. I was in tears as I am so frustrated and especially with my CPAP. My masks leak and my machine turns off in the middle of the night. I am still waiting for my CPAP supplier to call me back. No one wants to hear about this or seems to care. Thanks for posting as I am glad to know others are as frustrated as I am. Good luck to all of you.
Brittany Foster
Thank you so much for reading my post Wendy. I hope that they can get back to you soon and find something that works well for you regarding the CPAP . Are you a member of the PH forums? It is really a great community of others who "get it" and many are also using machines like BIPAP and CPAP. I would love to have you be a member and chat more there . I am also one of the forum moderators.
Jim W
I was really glad to stumble across these posts today. At the age of 51, 3 years ago, I started practicing martial arts and found my true passion. When we spar for long periods my lips would turn blue and I saw pulmonologists, cardiologists, vascular surgeons and other doctors to see what the cause was. I am constantly exhausted and I am tired of complaining about it. When I go to the doctors my conversation is almost always the same, always some version of "we do not know what is causing this" on the doctors side, and on my side its..."OK, since you do not know, who should I be speaking to? Who is an expert in this?" My upset manifests itself not through tears but through a semi aggression because I am so frustrated by the lack of answers and the cavalier attitude by which the lack of knowledge is conveyed.
I am told to take medications that dont help, breathe differently, take speech therapy?, run on my training off days etc...I can feel that something is not right and because I am in "good shape" many of the common stress tests did not show anything.
A few weeks ago I was testing for my brown belt (one away from Black) and was turning purple during the test but kept going because a black belt has been a life goal. They stopped the test a few times because of their concern for me and eventually stopped the test early. I am very concerned and do not want to share my level of concern with my wife until i know more. I have an appointment with a new cardiologist recommended by a doctor friend of mine and hopefully he can provide some answers.
I know that most people on this forum are dealing with a much higher level of discomfort and symptoms than I am... but I just wanted you to know that your posts are helping me and showing me that I am not alone in my confusion and upset. Stay strong!
Brittany Foster
Thank you so much for the comment, Jim. I truly appreciate that reading what others are saying and going through is helping you and hopefully you can get a proper diagnosis and be on the way to better treatment and better health. I know how frustrating it is to feel like you have been given the go around and aren't arriving at any conclusions. It DOES get better. Not overnight, but with the right team and the right amount of support it will feel easier to manage ! "hang in there" is such a cliche but sometimes that's all we can aim for!