Tag Archives: disenfranchised grief

The Great Medigasm -Part 2

All the right things…

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 going on.”

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!

Stay tuned for “The Great Medigasm! Part 3”!

You’ve Been Eliminated

“With a heavy heart I’m writing to let you know that *Amy passed away Monday morning peacefully in her sleep.”

Name changed for privacy

You know those reality TV shows, where there is a picture of each member, and as they are voted off of the show, one of the pictures turns gray every week?

It seems like such a ridiculous comparison; being booted from a TV show for entertainment, and someone losing their life to a ridiculous and heartless disease. Nevertheless, the connection is there.

I’ve already lost count of how many of these messages I’ve read. It’s the message that comes up in your support group when someone is taken from us too soon. No matter how many times it happens, you’re never ready, you’re never expecting it, and you’re always shocked.

I’m pretty sure everyone has the same reaction. It is grief, after all. It has a pattern. A cycle. If you’re familiar with it, you know that it doesn’t really end. You cycle back through it. Rinse, wash, repeat. It does get a little bit easier as you process the same loss over and over again. I tell people who ask that you will never forget. It will never go away. Anyone who tells you it will is lying, in my personal opinion. What will happen, however, is it will get easier. You will start to remember with more joy than tears. It won’t punch you in the gut as often. It’s a little less violent.

After seeing a version of this reflected in a humorous way on the show, Jane the Virgin, I am convinced many of us go through a full mini-cycle of this when we learn about these kind of deaths on a consistent basis.

The Kübler-Ross model of grief represents five stages of grief: denial, anger, bargaining, depression and acceptance. I think this leaves out one initial stage. It leaves out the stage of shock. It seems like a rather important one to me, because it describes what you’ll later refer to as a trigger. That first moment when you learn of a death, and the world stops for just a moment.

It’s not like anything else you hear in a day. Someone’s life is over. Many other lives are affected. Some more so than others. When it comes to illness, especially a shared illness among people in a support group, it’s not just someone. It’s someone like you. It could have been you. So the world stops. You stop.

For a moment, sometimes a very brief moment, and sometimes for a lot longer, there is nothing. Only shock. Only the words. You don’t process them. You just understand what they mean. I learned in therapy that the word for this is dissociation. At least, this is my first reaction. And I suspect this is the reaction people describe as shock.

It’s the same feeling you have when you have a grief attack. That’s what I call a Moments when all of this bubbles to the surface and it feels like it just happened. Even 20 years later, it can feel like yesterday. It just takes a trigger. Something that reminds me of that moment, and it’s like I’m transported there. It’s the same feeling of shock every time.

I recently received news that somebody who is critical in my life was diagnosed with a very dangerous disease, that could end in death. I knew I was not reacting correctly. But I went about my business, took care of some of the related issues, and it wasn’t until that evening, at least 12 hours later, that I broke down and the reality of what was at risk hit me. I wanted to call my old therapist and say, “I get it now. I understand dissociation now. To the point that I know when it’s happening.”

Today when I received news that someone in my support group had passed away, in my mind, I saw the name fading. Knowing people through a support group, especially when it’s for a terminal illness or one that has no cure and can become terminal at any moment, means you get very close very fast. You learn to trust people you have never met in real life in a way that you don’t trust anyone in your “real” life. Which makes those people very real.

Sometimes you don’t even have a face to associate with a name, but you know the name very well. You get used to seeing the same names responding when you post about serious and complicated issues. You start to associate those names with a feeling of being cared for. Of being understood by somebody who gets it. For me, my condition is only diagnosed in one person out of every million per year. I’ve never met anyone else in person that has my disease. So the only people who “get it” in my life ARE those names for whom I have no face to connect. Other than a profile picture or pictures shared since I met them. (This might be a good time to mention that sick people don’t often like taking pictures of themselves. So it’s probably not a surprise that most of the profile pictures are not actually pictures of people.)

After hearing or reading that somebody has passed, I sit in disbelief for a minute. However brief, even if I don’t recognize the name at all, I still experience that numb initial moment of shock and disbelief. I question whether I would’ve been ready if today had been my day. What if I’ve been meaning to do that I still haven’t done? This many people later, why haven’t I done them?

Then there is, for at least a moment, a feeling of denial. No matter how many times it happens, there’s a little person inside of you that screams, “NO!” Every single time. Stage one of the five stages. Or stage two if you’re counting my extra one.

And then it’s sort of feels like I experience the rest of them all at once. Anger, bargaining, depression and acceptance. It’s almost as if we live in a constant state of grief once you enter this world, and each time you learn about another death, it’s just a surge of all of these emotions. But somehow, still always, shock.

That moment where we realize one of the people who entered this game in reality just got… eliminated from the game. There is silence. We all entered together. We’ve all had a core experience in common. It has gotten real many times. We’ve seen this happen before. We all know this is going to happen. And happen again. And again. And again. And still again. We all know the next one could be us.

And then we have to go back to life. Knowing that some people are not getting to go back to life after this. We have to keep moving as if everything is OK. Please understand that we carry those gray pictures with us. And they pile up. You start with one, then you have a few, then you can’t remember how many you have. But it’s a wall. It’s a wall in your mind with profile pictures fading away… much faster than they should.

If only it was a reality TV show that would end with the players back in the game of Real Life.