In part one, I spoke about the medical experiences that have led to clinical PTSD and anxiety about medical appointment, especially when meeting new doctors. I probably expressed how if it all possible, I always take a second adult with me to medical appointments because there will always be more than one of them, but it’s so easy for them to say you hurt something wrong unless you have a witness present. But this time I expressed that I met a new doctor who gave me what I described as as a new term: a medigasm.
Even as I finally finish the last of the labs on the last possible day I can do them before my appointment, after putting them off since March because of fear of going to a lab among the virus, I at least am able to take a little bit of comfort in knowing this is my new doctor, and now I can see him virtually. Finally, a rheumatologist is on my case. With a neurologist. It’s like medical Christmas! Now prayers that nothing happens to the insurance and all of these doctors remain on the same or another plan together. I’m starting to just have anxiety about losing doctors now.
Below are all of things he said that, each on its own was shocking enough to rock my world, but together, left me speechless and wondering if I was about to wake up from a dream. I felt as if someone had told him all the right things to say to make me think I was crazy, or that I was on candid camera. If you’ve experienced all that is the world of a professional patient, you will understand each one of these statements and why they are shocking. Imagine getting them all at once.
1. “I have several patients with your condition.”
What? I have never even met anyone else with my condition. My pulmonologist has one other patient with it. That’s the extent of people I even know exist in the area with this condition. It is diagnosed in 1 out every million people, so many doctors don’t even meet someone with it, and it isn’t in their norms wheelhouse unless they’re done a felllowship at the Cleveland Clinic, where this condition is studied, as my hematologist did. But even the rheumatologists I met had to admit they did not have any patients with this condition. So hearing that this doctor has several, while also hearing very clearly that he understands this disease the way you would imagine doctors understanding medical conditions without having to research them. That alone was enough to shock the conscience.
2. “This is not about my ego, it’s about your health.“
I’m sorry can you repeat that? Louder for the doctors in the back.
3. “I’m an expert in medicine, but I’m not an expert in your body. You are the expert in your body. I need your expertise to be able to do my job.”
OK, now you’re just poking fun at me, aren’t you?! If not. I have a liar of doctors who could use your guidance!
4. “I am never going to treat you like you’re crazy.”
I am not sure that’s entirely medically responsible. If I wasn’t crazy before, I am most definitely crazy now, after dealing with a bunch of doctors who are not you. I am heavily medicated for your protection. You have been warned. But thank you for giving me the opportunity I wish others had given me to try listening.
5. “I get the sense you can hold a lot. I can tell you are in more pain than you are telling me. I have a feeling by the time you get around to asking me a question, it’s way out of the spectrum of what is normal and I need to listen.”
🥺🥺🥺 I have said these words to people, trying to get them to understand my pain tolerance. How did he know? I didn’t tell him. But this has happened repeatedly, to the point that most people who know me enough to know anything about my medical condition have probably heard about this issue. It has been repeated in many settings. The most telling was the one when the kiddo‘s father went after the nurse to explain that my tolerance for pain was much higher than normal people, including his, and that if I am crying, that means something is wrong. Got to give the man credit there. 🙃 He was not wrong.
6. “If you’re telling me something is wrong, I don’t care what the numbers say; it means we need to keep looking to find out what is goingon.”
Holy shit. I mean, just holy shit. Excuse my language, but there is no other thing I can say at this point that expresses my shock that this guy would actually pay attention to something if the labs come back showing that I am healthy.
7. “I’m so sorry a doctor treated you that way. What an awkward situation to be in.”
OK I’ve heard that’s weird. I’ve heard a sort of stunned silence because the doctor didn’t know what to say about what would happen to me. I’m sure as a professional, they were wondering in the back of their minds if I did something to provoke it. But this is the first doctor who actually acknowledged comprehending how completely uncomfortable my experience would have made ANY patient. He actually recognized the emotion I would’ve felt in that circumstance.
8. “Thank you for bringing me these records.These will help a lot. They’ve given me a lot of background information to work with.”
He said this while actually looking at the records and making reference to what they said! To be contrasted against the many doctors who say thank you for bringing them records and stuff them into the back of the file, never to be seen again. And he actually understood why they were each significant and why I brought those specific records and not every record I have. This showed me that he understood my disease. That is a rarity in itself.
9. “Oh you came from this doctor? I love him! I work with him all the time. I love working with him.”
One of my dreams is that all of my doctors will communicate with each other the way my late husband’s doctors communicated with his oncologist at meetings to discuss his treatment plan. This doesn’t happen for people who have an autoimmune disease covered by a rheumatologist, who is usually primarily set up to treat arthritis type diseases, and only sometimes deals with other areas like vasculitis. I still don’t understand why there is not a specific position to deal with autoimmune diseases like an oncologist, and we are left to see specialist after specialist and try to get them to communicate with each other, which sometimes leads to inferiority/superiority/insecurity issues and may even cost you a doctor. You would be surprised how many doctors operate like teens or young adults when it comes to inferiority/superiority complexes, and will not hesitate to put something in your medical record out of spite, that will hurt you when subsequent doctors review it. You can tell me this doesn’t happen, but as a retired professional, I know this happens. I would hear about previous attorneys, and I would carefully evaluate the client to try to find out if the other attorney was actually a bad attorney, or if it was a bad client and likely to be a repeat. It’s a valid concern. And a very irresponsible and immature way for a doctor or other professional to respond. It was such a relief for this doctor to understand and acknowledge how Trumatic it was to go through that experience when I was already going through a Trumatic medical experience to begin with.
10. “You’re on this drug? Already? I was one of the first doctors do use that drug when it was released.”
😳 Are you serious!? 😳 It turned out he had been trying to figure out how to get his patience on the auto injector, which my pulmonologist had just gotten me approved for. He was very excited to know there was a way to do it, and was very excited that I was already on that treatment because that would’ve been his recommendation. He knew extensive information about the studies, and from there on, his knowledge surpassed mine. That’s the way I like it.
There were so many wonderful things he said, that I’ve decided to make this into a three part blog. I have written a lot of blogs and posts complaining about doctors, and they have taken a lot of space. But never have I had so many good things to say about a doctor that I ran out of space twice. But this is that time, and I’m willing to give it the time and space it deserves. Because I’ve noticed good doctors have no idea what other doctors treat us like. And we deserve better! So demand it! Wait for it. It took me 3 years. One step at a time!
Not so many years ago, I was in the depths of despair, dragging myself from whatever bit of legal work I could do, to one appointment after the other. Appointments with doctors, appointments to get imaging done, appointments to get lab work done, appointments to get this scan and that scan, sprinkled with random emergencies and hospital stays. And let’s not forget a lot of specialists with no diagnosis.
If got so bad that after one point I had to take a Xanax just to go into an appointment with a new doctor, and sometimes even with established doctors. At every appointment, I was prepared for the following events to take place, whether one at each appointment or all in one:
Doctors would need medical records. The first appointment would be spent filling out forms for record requests from other doctors. Every appointment ended with the same sentence: “We will request records from your doctors and go over them at your next appointment.” By the next appointment, if I was lucky, half of the doctors had sent in their records. If I was even luckier, the doctor would actually look at those records, and ask me one or two questions about them.
Eventually I was able to cut down on this by taking notebooks with me, at one point filling a briefcase, with all possible records I could keep in my possession. I had one binder for medical records and notes, and a separate one for labs, scans and imaging. Some doctors laughed at me. The best ones thanked me and complimented me.
“Have you ever had a DEXA scan done?” “Sure. Do you want the one from last year only, or the one from three years ago and the one from last year?”
“What has your highest eosinophil count been?” “That was with Dr. E, on this date. Here’s a copy.”
“Have you had any surgeries to deal with the sinus polyps?” “Four surgeries. Would you like a copy of the surgical reports?”
I may have a list of several issues. I will leave and write those issues down. I will not be asking or receiving an answer to most of those questions. If I am lucky, I will get to ask one or two of them. I will always have the one that is most urgent circled, and the next most important/urgent underlined, just in case I get lucky.
Whether or not I get to ask my questions depends on whether the doctor is even interested, or even looks at me during the entire appointment. If they bother to give me an opening to ask a question, I will go with the most important question in case I don’t get another chance. If the question is answered quickly or brushed aside, I may as well go for another one. At this point, I may be able to go through multiple questions if they are being brushed aside, although I will usually stop asking if this is the sense I’m getting.
Unfortunately, this is the result of many experiences including some that are traumatic, during which I was actively bullied for asking too many questions, or for asking questions that were “above my pay grade.” In case you’re wondering, patient is the lowest pay grade in the medical field. In most places, you are both the reason that institution exists, and the least important part of it in practice. Hospital records, statistics, professional egos, fear of litigation, and many other things come into place long before the patient’s own sense of well-being.
It is actually possible to get a clean bill of health from a doctor based on all of their criteria, but to remain chronically, or even terminally ill because they didn’t think you should ask additional questions or they should investigate certain issues. In my case, it only took three years to get a diagnosis. Some patients I have spoken with across the world with this condition, have taken 16 years or longer. I’m grateful it only took me three. And that I’m still alive to complain about it.
My Xanax and my temper has to remain in check. I have been treated in such ways that they have elicited both fully blown meltdowns, with me just sitting there in tears, not having a clue what I should say or do next, as well as erupting in anger when I have had the confidence and clarity (and the right, or should I say wrong, buttons have been pushed), to allowed me to tell someone exactly what I think of their professionalism and competence. I have to be ready for anything.
But what’s strange is that I don’t know what is more important, professionalism and a bedside manner, or medical knowledge. Often you can’t have both. This is what I strive for, so inevitably, I’m let down because the doctor I get has either neither of these, or missing one.
Usually it’s professionalism. Of my best three doctors, two of them were previously knowledgeable about my condition. One of them was not knowledgeable about it at all. However, all three of them took the time to learn more about the condition when I became their patients. The one who didn’t know anything about the disease was a pulmonologist, and he was fascinated. He was Harvard educated, so he recognized that it was a rare condition, and that he was lucky to meet somebody with it as a medical professional, because it would give him experience many doctors don’t even have the opportunity to learn about.
On the other hand, competence is also sometimes an issue. I went to an experienced doctor, and he performed a blood test. When I went back for my second appointment, he looked at the blood test and said I could not have the condition I thought I might have, because I tested negative on a specific test. The thing is, I was already educated enough to know that 40% of patients with this condition test negative on this particular test. I never judge based on one mistake. However, not long after, I played a portion of a seminar that had taken place six months earlier, discussing the fact that even the best allergists don’t know a particular fact about my condition. This Allergist said to me, “That’s just a researcher. I’m a clinician. I do hundreds of these a year.”
Game over. This particular researcher is one of three who studies an underlying condition I have, which I was first diagnosed with, and which carries some of the same diagnosis criteria for my main diagnosis. In addition to her group, which studies this condition exclusively, at a Harvard learning hospital, she has actual patients, in addition to continued research and studies with patients who have been diagnosed and register with her across the world. She actually responded to a message I sent, and we spoke for an hour when I was initially diagnosed. One of the nicest doctors I’ve ever spoken with. In fact, she was the person who recommended Nucala to me to begin with. Which is still the primary drug I am using other than chemotherapy to manage my condition.
In any case, it is a miracle for me to find a doctor who is both competent, knowledgeable or willing to learn about my condition, and is not insecure and walking around with some kind of superiority complex that keeps him from being able to discuss my medical condition with me like I am a human person. Capable of understanding English words. And believe it or not, even some medical ones by now. I take what I can get.
Then there are just the doctors who are abusive, and it doesn’t matter if they are knowledgeable or not, because their ego is bigger than their desire to practice medicine. Period. End stop. The same can be said for any profession. Including attorneys.
However, I took the time, in my opinion, to make my clients feel valued, and would sometimes stay in the office very late, or work overnight, trying to help someone because I knew they were in the depths of despair in their life, and I had the power to make a difference. Of course, sometimes this was abused, and I had to set boundaries. However, most clients had a decent understanding of boundaries, and had a great sense of appreciation when they knew I was going above and beyond. I am still in touch with some of those clients. I have watched their families grow and succeed as a result of, in some small way, the work I did to help them. Nothing gives me more joy than knowing this, other seeing than my own children grow.
I don’t expect doctors to give me any more than what I gave my clients, and I understand that they are human and perfectly imperfect. I just ask that they be honest and fair. And if they don’t have time for me, or are not interested, that they are honest about it and let me move on to find somebody who is. I’ve been blessed to find three doctors who have fit this bill. One of them moved suddenly, and I lost him. But I was moved up to his boss, who was even better. But it took many years to find the two doctors I credit with saving my life, who I choose my insurance around making sure I won’t lose. Because when you’ve had some of the nightmares I have, those doctors are more important than family members.
I had two experiences I have trouble even thinking about because they were so shocking. They are long stories, but they are good ones. Unfortunately, they are for another day. When I’m up for a trip down that particularly thorny memory lane.
Fast forward from 2016 to 2020. I am now post diagnosis. My symptoms causing most of the most life-threatening issues are somewhat under control. Those that are not under control are managed and monitored aggressively. However, my expectations from doctors have dropped dramatically.
I only think of the most annoying symptoms now, and try to figure out how I can try to work them in if I’m not given the opportunity to ask questions. I usually can’t find my records. I have issues with memory and cognitive decline, and I’m seeing a neurologist to find out if it’s only related to stress and other external issues, or whether there is any additional physical cause other than white matter changes to the brain that were found in November.
I do have a folder in my dropbox with all of the documents that contain records used to diagnose me. I still encounter doctors who seem to not believe my diagnosis, so I print these out before every new appointment. They contain two separate diagnoses of the same condition by two separate doctors. The first is the medical director of oncology and hematology at a local hospital. However he did two fellowships at the Cleveland Clinic and had first hand contact with the rare condition I have. So he clearly diagnosed me, but wanted me to follow up with a rheumatologist because he is not a rheumatologist. He’s primarily an oncologist and hematologist. However, he stuck with me and assisted my pulmonologist when he realized my rheumatologist was leaving me out to dry.
Being the medical director, he was able to keep me in the hospital to get the biopsy and medical records necessary for my doctor, even though after I gratefully accepted the resignation of my then rheumatologist, who had an Inferiority complex that impeded her ability to practice medicine, and I left the hospital having made an appointment with a specialist in vasculitis at the University of South Tampa, listed with the organization for my particular condition on the national website. I was going to the best of the best for a final determination. I was sick of the guessing.
In fact, by the time he diagnosed me, I was in the same state of shock I was when the first one diagnosed me. I had been convinced I was imagining it, that he was going to confirm I did not have it, and I would have to start over. I still remember walking out and telling my dad he diagnosed me and I was starting chemotherapy. I still didn’t believe it. I also remember when I showed up, I was bloated, I was still having the life-threatening daily asthma attacks, and was having a conjunctivitis eye flare that looked as if I had smoked the fattest blunt I had ever seen just before going to the appointment. I was scary in the mirror.
I lost that doctor when I got divorced and lost that insurance. Although he could have taken me at a different hospital and I believe he didn’t because during my divorce, my former husband challenged my diagnosis and was not going to accept it unless my doctor came to court from Tampa, canceling other patients, who like me, had waited five months to see him. I cried and cried the night before our trial as the doctor was trying to get out of the subpoena, and I desperately wanted to allow him. Ultimately, I just settled so we didn’t have to deal with interrupting that doctors practice. Unfortunately, he didn’t get the message in time and he came to Orlando anyway. I still lost him. It’s been three years without a rheumatologist, with my pulmonologist doing the best he could to manage my rheumatological issues and meds.
If I’m being honest, I have become so careless and my expectations are so low, that I didn’t even know if this doctor was board-certified, had privileges at the hospitals I was referring to, or even where he went to school. I knew nothing more than he was a rheumatologist, he took my insurance, and he was willing to see me. Everything else, I put in the hands of God. I didn’t even take a Xanax. I was beyond caring if I melted into a puddle of tears. If I did, maybe he would understand what I had been through. I was just ready to be disappointed, honestly.
It started much like any other appointment these days. It was raining outside and a call to confirm they had my referral that morning resulted in finding out they didn’t. My pulmonologist’s office swore they sent it already, but they sent it again. They are my heroes. They come through at a moments notice. And they deal with my high maintenance issues. With Grace. Always. I never tire of singing their praises.
I was almost hoping they wouldn’t get the referral in time so I could reschedule, because as usual, I wasn’t ready. I didn’t have the records I wanted ready. So as I was showering I reprinted my diagnosis documents for probably the 20th time. I grabbed a stapler so I could staple them in the parking lot while waiting, or in the waiting room. I didn’t realize I grabbed a stapler with no staples. So my records were in a crisscross manner, the way I would sort records before stapling when I worked with multiple records. I was a mess.
As if things couldn’t look any more promising, when I finished my paperwork, I went to step out of the office and hand it to the front desk, but the hallway was intimidating. They were twice as tall as the doors, yellow, and the corridors were long. I was reminded of the kind of scene you see in horror movies set in psychiatric wards of a remote hospital. I don’t know if this was some kind of psychological manifestation of the experiences I was used to having in new medical offices, or if there was really something creepy about the hallways. Let’s just say I decided to turn around and go back and wait in my room.
As I sat there, I realized this seemed to be an overreaction, and I questioned if I was losing my mind a bit. I felt unusually uneasy. In fact, I felt as if I was high. I thought back to when I took my daytime medical marijuana, and the fact that I take a daytime one that does not affect my ability to function, and a nighttime one that helps me sleep. That’s when it hit me. I had accidentally taken my nighttime dose. I was high as a kite. Fantastic. I finally get an appointment with the rheumatologist, and I accidentally get high before the appointment. Things were lining up to go even worse than I was used to them going.
Enter the doctor.
He was wearing blue jeans and a button down shirt. He walked in and gave me an elbow bump. From that point on, it was like I was in a movie. I’m still questioning whether I was just so high that I have some alternate recollection of what happened, and it wasn’t actually the virtually out of body experience I remember it to be. I’ll list the things he said to me, and explain briefly why each one was shocking. All of them affected me. I just kept thinking over and over again in my mind, “Is this guy real?” I’m not sure at what point it happened, but at one point I just sat there thinking in my head, “I think I’m having a medigasm!” I have never used the word before, and I don’t think I have ever heard it. But I will be damned if it wasn’t exactly the correct word for what I was experiencing.
When I left the appointment, I had a message waiting from a friend who I had asked for advice about an unrelated medical issue. She knows my history, so I shared my excitement with her, along with my new vocabulary word. She is a fellow grammarian, a colleague, and a terminal cancer patient. I have definitely noticed that in addition to many shared experiences, despite different diagnoses, we also have a similar love of the human language, and a need to express ourselves. We also have a need to be treated the way we treated our clients when we practiced law. We expect nothing more than we expected of ourselves.
She was very excited about my new word. (And my new doctor. She knew the feeling.) I was so excited about it I almost told the doctor. But I didn’t want to take a chance on scaring him away. Looking back, I get the sense he would have just laughed. But I wasn’t willing to take that chance just yet.
All of what I’ll share with you shows why I think I will soon be able to make a joke like that without him finding it offensive for thinking it’s anything other than what it is: jovial satire to deal with the inhumane, but common experience, of being disregarded in the medical field, and the subsequent shock to the very CORE when this is interrupted by a rare doctor who seems to be “all in.”
I’ll share the words that either mean I have found the third member of the holy Trinity of my medical care team, or that he is trained or studied and well-versed in psychology and how to make someone feel heard, seen, and empowered. The question about whether he is the real thing is whether he will remember everything we discussed next time I see him, and whether he will actually have reviewed my records like he says he will. I have seen the dog and pony show before. I have gotten excited before. I have been disappointed before. Too many times. So many times, that I have learned to take every success with a grain of salt, and with significant doubt, waiting for the other shoe to drop, and knowing that when something seems too good to be real, it probably is.
Nevertheless, all of the following things lead me to believe I may have struck gold. I don’t want to look a gift horse in the mouth, so I will wait a bit before I confirm whether he is board-certified. And all of the other things that I now just consider luxuries when looking for a doctor. They used to be dealbreaker criteria. I had to let that go. I’m willing to settle for what I think I may have found today. If you’ve experienced half of what I have, you will completely understand why each of these things was a miracle on its own, and why together in one hour of an appointment, they caused a new term to be born.
Stay tuned for details about the life-altering experience I had in part two of The Great Medigasm!