Imagine being told, “There’s nothing wrong,” when your body screams otherwise. In the face of medical gaslighting, your voice is the beacon of truth that demands justice and change. For today’s episode, our guest, Melissa Mullamphy, takes us on her rollercoaster ride through the healthcare system. Her tenacity to seek answers and justice proves that sometimes you have to be your own advocate. She shares the heart-wrenching moments of her life, from a Code Gray emergency to a post-COVID hangover. Melissa talks about the white coat syndrome, the impact of medical malpractice, the importance of shopping for the right doctor, and the shocking realization of a broken system that demands accountability. Melissa also covers the Patients’ Bill of Rights, standards of care, and the crucial steps needed to reform the medical system. Despite the darkness in the health care system, Melissa emphasizes the importance of caring for your mental health during traumatic medical experiences and supporting others during tough medical times. In a world where the phrase “nothing is wrong” can mean everything, Melissa’s story will leave you inspired and determined to stand up, speak out, and confront medical gaslighting head-on. Tune in now.
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When Doctors Doubt You: Confronting Medical Gaslighting With Melissa Mullamphy
I’m sitting here virtually with Melissa, and we’ve been talking for a bit about her passion and her advocacy work with the medical system. Melissa, as you’ve been speaking with me about some of your stories, the inspiration for writing the book and speaking about these topics, I think it’s very natural to start reflecting on how this impacts each of us. I’m thinking about my experience with the medical system, which I’ve been privileged not to have very many issues.
I’ve spoken on the show about seeing a therapist, as you heard about, Melissa, in one of my episodes. I actually had a wonderful experience with a therapist. Where I’ve struggled has either been my exploration, trying to figure out my sleep disorder, which I have the privilege of it not being urgent. I have the privilege of it being something that I can take my time with.
What I witnessed through trying to get some answers is how hard it is to get answers. How hard it is to ask for help and be met with sometimes doctors saying, “I don’t know. Nothing’s showing up. I’m running all these tests. You are fine.” Hearing that but knowing deep down that I’m struggling with an issue, it sometimes feels a little like gaslighting.
That totally is gaslighting.
I’m experiencing something and a professional is telling me that I’m fine. I think it’s one thing when you experience that in a non-urgent way, where you have the luxury of time and you can go see other specialists. You can put it on the back burner. You can try to figure it out on your own, which is essentially where I’m at. It’s a whole other thing when it’s an urgent medical issue, which is something that sounds like you’ve experienced a lot of. You’ve shared stories of your own stories with your mother and father’s passing. When you say it’s gaslighting, what has shown you that that’s what’s going on here?
You know your body the best out of anybody. A lot of times, if a doctor cannot figure out what’s wrong with you and tells you nothing’s wrong and gaffs off your symptoms, it’s being medically gaslit. I had a situation in 2020 where I had significant abdominal pain, and I went to an emergency room. It was during COVID, so you couldn’t have anybody with you.You know your body better than anyone. Click To Tweet
I know my body, and I had significant pain. I was there for seven hours. They did a COVID test. They never drew blood and they never did some scans or radiology. When the nurse came in and told me I was being discharged that nothing was wrong, as I was throwing up constantly and couldn’t even get up to reach my phone, I said to her, “This is ridiculous.”
After I said that, she said to me with two snaps, “You’re not going to get anywhere like that.” It says in my file, “Patient yelling at staff.” I became a Code Gray. If you know what a Code Gray is, in the medical field, it means like a combatant patient. They marked my file as a Code Gray because I made that statement to the nurse.
What they didn’t realize at the time is they drew up my discharge papers, they unplugged everything, I got up to go to the bathroom and I passed out. Thankfully, I passed out. When I woke up, the same nurse who deemed me a belligerent Code Gray was on one side of me. Another nurse was on the other side of me. They were flooding both my arms with fluids because my blood pressure was 70 over 30. I was tachycardic. I was about 150 beats per minute, which is very dangerous. They had to resuscitate me. The hospitalist came down. They had to change the entire file. The entire file said, “Abdominal pain. Patient has no abdominal pain.” I couldn’t move. I was in the fetal position. Had I been able to move, I would’ve picked up the phone and called 911 in the emergency room.
I got admitted. The next morning, I went for an emergency CAT scan and suddenly, I had about ten people in my room. I was on morphine and they couldn’t control my pain. Thankfully, a trauma surgeon came in and within twenty minutes, I was being run down to the OR. I have a lot of hair. They were putting the cap on my head as I was going in. They put a shunt in my bicep with a catheter, similar if you have chemotherapy. You have to get a port because I needed six transfusions of blood.
I woke up two days later in intensive care. Had I not passed out, I would’ve called my husband at 3:00 in the morning. He would’ve picked me up, and I would’ve not woken up the next morning. At the time, my son was ten years old. My doctor said, “You would’ve been dead,” because I had so much blood loss. I had a GI bleed. This was a doctor, she was actually a PA who would not listen. I begged, I cried. I was shaking. Did I curse at the nurse once? Yes, but I was in so much pain. I was dying.
A lot of people don’t understand that you are the best advocate for yourself and your own body. You know your body the best. I always try and tell people that you have to trust your gut, but sometimes you have to push back against doctors. You don’t have to be disrespectful about it, but they’re doing their job, but they just might not understand you at that moment. This PA, how she wrote no abdominal pain is beyond me. After it happened, I wrote to the leadership of the hospital and the person in charge of the emergency room. I got a, “We’re sorry we messed up,” but these things happen all the time.You are the best advocate for yourself and your own body. Click To Tweet
Most medical malpractice cases are from misdiagnosis. It’s a scary thing. For your situation, while maybe they’re not picking up something on a test, it doesn’t mean it’s not there. That’s what happens to a lot of people. They get lost in the shuffle. I posted on my Instagram a story, and this is horrific. It was a young woman in the Air Force. In 2021, she was up in Alaska. That was her duty station. She went to sick call because she had severe abdominal pain. They did a urinalysis. They said she was COVID-negative, but they didn’t trust the test. They told her to go back to the barracks and isolate.
A couple days later, she still is in severe pain. She goes back. She literally had a big lump on her neck, so that meant that her lymph nodes were inflamed. Her body was fighting something. They diagnosed her with acute tonsillitis, a sore throat. Six months later and about five sick calls in between of being dismissed, finally, somebody saw that her stomach was distended, and they gave her a CAT scan. There was a 24-centimeter mass on her left ovary. It was stage four ovarian cancer. It’s very rare for young women to get ovarian. If they do, it’s usually treatable. It’s usually caught early and it’s usually stage 1 or 2.
The more horrifying thing about it is during the time that she was not getting help, she made a TikTok video. It was a cry for help. She’s like, “My name is Emily whatever. My command is X, Y and Z. I’m trying to get help. I’ve been to this doctor and that doctor. Nobody’s helping me.” At that time, in 2021, I saw her video and I said, “How can I help? What can I do?” It was breaking my heart. I saw it from the HunterSeven Foundation. They’re a nonprofit that help support veterans that have post-9/11 exposure-related cancers. I saw that she passed away. I felt so guilty because we lost touch, but I also felt so angry because she was medically gaslit for six months.
They did take the cancer out. She went through all the chemo. It came back. You see in her TikToks, she still never gave up hope. She was still fighting. She didn’t give up. She was doing what she was told, but she was also adding holistic stuff to it, but then she passed away, which is sad. At 25 years old, she didn’t deserve that. The other part of it that was horrible is because she made the TikTok video, because she was crying for help, they court-martialed her. They brought charges against her. They were going to give her a dishonorable discharge. She was going to go to jail because of making that TikTok video and saying the names of the doctors that gaffed her off as well as her command that gaffed her off. Now, she’s gone. Everything’s too late.
I have a form on my site now that if you open it and you sign, it goes to your local congressman or representative so they see it and they’re inundated because this should have never happened. When they did that first urinalysis to her, the first appointment she had, they found malignant cells in that urine, but they never followed up on it. Had they followed up on it, she would have survived, probably. It wouldn’t have grown to be a 10-pound tumor.
This happens all the time. It happens every day. It happens in the veteran community. It happens in the civilian community. What I do and what I’m passionate about, most of it is because the way my mom passed away and the things I’ve been through and things that I went through at the end of the year with my dad. It’s like if I can help other people not have to go through what me and my family went through, whether it be through blog, whether people reach out to me through DMs and Instagram, whether it’s through a checklist that I provide on my website of questions you need to ask, that’s my goal.
My goal is to not have people go through what we went through and to help them navigate the healthcare system. In what I call post-COVID hangover, everything’s worse now than it was in years ago. There’s less availability, less time, less specialty appointments. Right now, where I live, if you need to get a specialist appointment, you’re probably looking at a six-month wait. In six months, you could be dead. It’s a problem now.Everything's worse now than it was 10 years ago. There is less availability. There is less time. There are less specialty appointments. Click To Tweet
Let’s say some people are having GI problems, and they try and go to a gastroenterologist and they say, “It’s August now. We can see you December 1st,” a lot of people will take that, “I guess that’s the only thing available. I just got to wait.” No, you should not wait. You should get on the phone, keep calling, and look in your area for another provider. You have to keep trying and you can’t give up because when those things happen and care is put off, that’s when you find out that something’s wrong because it took too long for you to get the proper care.
The question that’s coming up for me is why is this all happening? When you bring up the context of the post-COVID time, it sounds like part of the why, but it also seems like things have been challenging for a while. For context, are you seeing this mostly through the perspective of the US medical system?
No. I get DMs. I was asked a question from Good Morning Portland or something. The guy asked me, “Do you think we should have healthcare for all?” That’s always a doozy because I worked in the reinsurance industry for twenty years, so I understand insurance very well. I worked on the property casualty side, but I also understand life health.
In a perfect world, it would be great if we had healthcare for all, but it’s not realistic because I’ve talked to people from Canada and the UK that have those platforms and those availabilities, and the wait is longer. I see probably five doctors pretty routinely. You become friends with them because you’ve known them for so long. One of them said to me, “Missy, we got to see people every ten minutes. I know you because I’ve known you for years. I know your file. I know what you’ve been through. I know your health issues, but the other 80% of people, I don’t know their names. I don’t know their background. I don’t know what tests they’ve had.”
This is what I try and tell patients and people that follow me and my readers. On the other flip side of that, you almost have to go armed with a piece of paper for a doctor’s appointment that says, “How long have I had these symptoms? When do the symptoms get better? What makes them worse? What medications am I on? Have they helped? What specialists have I been to before? What tests have I had done so they’re not redone or that if they have to be redone, they can compare them?”You have to go to the doctor's armed with your medical records. Click To Tweet
White Coat Syndrome is a real thing. That’s when people see a doctor in a white coat, and they see it as a figure that makes no error. A figure that whatever they say goes. They’re smarter than you. Of course, they went to medical school. They’re definitely smarter than you. They know more things than you, but you know your body, and you have to hold them accountable to treat you the right way and not ignore what you’re saying. It’s not easy. A lot of people don’t have that understanding or fight. That’s what I try and give people the tools to understand what they have to do to get the right treatment.
I’m grateful for that work because, as you’re describing that, I’m recognizing how much ignorance I have. I’m generally a prepared person. I think about what I want to share with the doctor, but there’s still I don’t even know to write down, to bring with me and to request. All of these things feels confusing. I think maybe it’s because, to your point, I’m waiting for the doctor to ask me a question. I’m waiting for the receptionist to give me the form to fill out. I’m waiting for somebody else. It ties into all this waiting that you’re describing. If we wait too long, it can become too late. Yet, how can we do better if we don’t know better? Your advocacy is so important because you’re putting this information out to people that they don’t even realize they need to know.
This is the way I’ve written for some physician magazines and stuff. This is the way I look at it. If you’re going to buy a new car, you research the car. Do they break down? What’s their maintenance? How long do they usually last on warranty? You should do the same with the doctors you select. If you google a doctor, you can see what people think of them. You should shop doctors.
The other thing that happened when my mom was diagnosed with ovarian is she was getting a four-day inpatient chemotherapy. My sister and I are very different. She’s very conservative, which is great. She’s always on time. She’s not a procrastinator. She’s a list person. I’m the total opposite. I’m like, “Whatever comes at me, I’ll get to it.” I’m not always organized. I have a trucker’s mouth sometimes. We’re opposite in that way. We work together in stressful situations, which is a good thing.
When my mom was getting the inpatient chemotherapy, I got a text from my sister and it said in the subject line, and again, she doesn’t curse. She said, “F****** terrible.” With that, I googled the drug that my mom was being given, which was called Ifosfamide. I googled, “What happens when you get this drug?” I left my job. I went to the hospital. My mother had every symptom of chemotherapy toxicity except coma and death.
It was Labor Day weekend. I knew that her oncologist had a boat, and it’s near a lake. This is the way I think. I called him up. I said, “You need to come over to the hospital. Look at my mother before you leave because I think she’s toxic,” because I knew he was going to be gone for four days. He came in and he took one look at us. He took one look at my mom. My mom opened one eye. He is like, “She’s fine.” We were dying inside because this was after she got the surgery. This was called a cleanup chemo. Of course, we’re trying to do everything to save her, everything for hope. We trusted that she was okay.
I befriended a lot of the nurses on the floor. That’s another thing that you need to do. The nurses are the connective tissue and what makes a hospital run. You always be nice to your nurses. I’ve probably, in my lifetime, only met two nurses I didn’t like. They can make or break your case. We befriended the nurses on the floor because my mother had been admitted a bunch of times. One nurse called me up and she said, “I have orders to hang another bag for your mother. This isn’t the Connie that I know. Please come before I do this because I don’t want to do it.” She actually probably broke protocol. She probably broke the rules, but God, did I thank her.The nurses are what hospitals run on. Click To Tweet
Why you go into medicine is to help people, not harm them. I went. I rushed over there and, again, it was bad. She was hallucinating. She could not stop throwing up. She was delirious. She was tachycardic, the whole nine yards. I called the oncologist’s office. One of his partners came in. My dad and my sister came over too. The three of us were there. He looked at my mom and he was like, “For Connie, we’re going for hope. She’s got to get through this. We have to be aggressive.” Stupid me. My mother said, “Okay.” We hesitantly agreed.You go into medicine to help people, not harm them. Click To Tweet
The next morning, I get up early in the morning. I go to the hospital. I find my mother flat, her arm hanging off the bed. She’s got throw-up coming out her mouth. There’s no nurse. She could have aspirated. It was horrible. At that point, I’m like, “Now I don’t trust you. It’s a wrap. It’s done.” My sister and I stayed there. That was Saturday to Sunday to Monday. Monday afternoon, at around 5:00, the original oncologist came into my mother’s room. I was leaning up against the bathroom and he looked at me and said, “You’re right. She was toxic.” I left this out. The first time I said that she was toxic, which was day one, he told me to stay off the internet. He is like, “Just stop, Missy. Stay off the internet.”
Four days later, the same man comes in and he says, “You’re right. She was toxic.” I’m like, “I work in the reinsurance industry. This is your job.” That was two weeks. She doesn’t even remember because she was poisoned. When you get toxic from chemotherapy, you are poisoned. She’s lucky she survived it. Unfortunately, any gusto, hope or grit that she had left in fighting this beast of a disease, after she was toxic, was gone. Her spirit was broken. It was gone. Thirty-one days later, after she had gotten the operation, all of the cancer was back and it was back with a vengeance. It was a very aggressive cancer.
Where I’m going with this is Google can be your best friend or your worst enemy, but in situations of disease, mental health, whatever, you have to be an informed consumer of the care that you’re going to get. That includes what your prescriptions are, what possible side effects there can be and everything else. I’m not happy that I was right because it was horrifying, but it was another example of a family that was holding onto everything to try and save my mother, my father’s wife, my sister’s mother. We’re all in this emotional state where you are trying everything possible to save her. You’re getting medical opinions that are like, “I’m the doctor. I know everything. Whatever you do, you do. You don’t have that MD behind your name, so you can’t be right.” You get blown off. That happens all the time.You have to be an informed consumer of the care you're going to get. Click To Tweet
It’s so unfortunate. It breaks my heart to hear that you’ve been through this and for anyone else who can relate. You said that people go into medicine to help not harm, but it sounds like a lot of harm is being done. It’s confusing. I hope that it’s not intentional. I hope that it’s some other explanation. Do you think that doctors believe that they’re helping? Are they ignorant of the harm that’s being caused? I think it’s still one of those, “How is this happening?” question.
I think it’s a couple of things. There’s a quote that a lot of people use. I think people go into medicine with all the right intentions. I think that nurses, by nature, they’re caring and empathetic. They love what they do. I think right now our system is so broken, and the people that make the revenue in the hospitals are forcing doctors to take so many cases at a time, it’s impossible. Due to their expectations from the doctors, mistakes happen. It’s happening more and more. I’m not giving the doctors a pass because if you messed up, you messed up and you need to own it.
I’ll make up a number. Your general practitioner has to see 50 patients a day. Do the math on that. How much are they doing and how much are they understanding? In the hospitals right now, when my dad was sick, I would say at least 40% of the nurses on the cardiology floor were floaters. Floaters are a lot of people, the travel nurses. It’s in my opinion that there are a couple of things that happen when you have a lot of floaters. 1) They make more money than the people who are on the hospital payroll. 2) They don’t have performance evaluations from the hospital that they’re working in because they’re temps. They’re floaters. 3) They go where the need is.
If you’re on the cardiology floor on Monday, you’re working oncology on Tuesday, you’re working post-op on Wednesday, all of those floors have unique idiosyncrasies that you have to understand in the patient profile. If you’re working, you’re bouncing around like that, how good are you at your job? What standards are you being held to? This is normal corporate culture. If you’re a nurse and say you’ve been in a hospital 25 years, and you’re up in the chain, and now you have this person coming in that’s a temp, that’s a traveling nurse, she’s making more money than you, she doesn’t know what she’s doing possibly. There’s going to be that grudge, I would say. It’s normal, and that happens a lot.
When my dad was ill, we saw a lot of travel nurses. It begs the question of how much skin do you have in the game. They don’t have a lot of skin in the game. The same thing for teaching hospitals. People don’t understand. There was a situation when my mom had bilateral DVT, deep vein thrombosis. Those are clots behind her knees and pulmonary embolisms in her lungs. She was in a cardiac unit. That’s common with cancer. Cancer makes you throw clots. I went to see her after work, and she was on Ativan and pain meds. She was jacked up. She’s tired. She was on narcotics, the whole thing.
It was a teaching hospital. One of the residents came in and he asked her what her healthcare proxy was. My mom was like, “If there’s no hope, I don’t want anything.” With that, he got up and left. I said, “Ma, you just told him if you have a cardiac arrest tonight, you don’t want anything.” She goes, “No, I didn’t.” I said, “Yes, you did.” She’s like, “No, I didn’t.” “Yes, you did.” I went out and I got him. I had him sit down and I said, “Sir, what did you hear?” He’s like, “She doesn’t want anything. No resuscitation.” I said, “Absolutely not. What she meant by that was, and like a lot of people think, ‘I don’t ever want to have a vent. I don’t want to be kept on life support. I don’t want to be fed through a tube.’ That’s what she meant. She didn’t mean that, ‘If I happen to have a cardiac arrest tonight, leave me alone.’”
He didn’t hear it that way and he didn’t ask the right questions. I’m thinking, “What if I didn’t show up?” It gets worse because I happened to look down at her bracelet, and you hear these stories, but actually, this was my mother. I looked down at her bracelet, and it has another woman’s name on it. That bracelet is your health record. That’s your allergies, meds, and diagnosis. It was late at night. I had my Blackberry on me during Blackberry times. I didn’t think to take a picture or I wasn’t thinking litigation or any of that crap. I got the head nurse and they got rid of it real quick.
I said to my mother the next day, “You could have gone downstairs for an angiogram or something at 2:00 in the morning and wouldn’t even have understood or known it because you had another woman’s barcode and medical file on your wrist.” That’s a big mistake. You say to yourself, “How the hell does this keep happening?” It does. They don’t have people that are going to show up at the hospital. They’re by themselves. Maybe all of their family died or maybe they have no friends or whatever.
I always say that if you have a loved one in the hospital, you have to go. You have to show up. You have to go there when doctors make rounds. They usually make rounds between 6:00 and 10:00 in the morning, especially if it’s an older parent. They don’t take it all in. They’re so overwhelmed with their pain or they’re scared that they’re going to die or everything else that comes with it that they don’t take everything in when the doctor’s speaking to them.If you have a loved one in the hospital, you have to go visit. Click To Tweet
I saw that when my dad got sick. I tell people, “If you have the ability, you have to show up.” That was hard during COVID because if you weren’t vaccinated, you couldn’t go. I’m not vaccinated. My neighbor got sick. I had to get tested. The test was only good for 72 hours, and I had to get tested again because he had nobody. I would show up for him. I had to actually lie and say I was his daughter because he had nobody. These are real stories. I guess it’s a long-winded answer to your question of why. I think it’s a bunch of things.
Unfortunately, a lot of nurses are exiting the occupation because of what happened during COVID, but also because of the nurse-patient ratios that are way too big, so they can’t care for their patients like they need to. I’ve met so many that are exiting and doing things differently because they can’t take it. If they can’t be at 100% for their patients, they don’t want to be 50% because when you’re 50%, things happen that are bad. It’s a bunch of that stuff I think that’s going on.
Add the economy, the cost of healthcare, and people that couldn’t get scans, mammograms or physicals during COVID because they weren’t doing those appointments at that time. That’s another thing that’s happening. People, when they are presenting now in 2022, 2023, because almost two years was lost of maybe you needed to follow up on something. They’re presenting an emergency room staged out with disease, and it doesn’t have to be cancer. It could be diabetes, heart disease, or anything. It has been a snowball effect on everything. That’s my opinion.
The more you talk about it, the more stories come to mind. One quick one is you reminded me of a family member who was impacted by an unfortunate accident. When they were in the hospital, they also got the wrong treatment, and they were going to be transported to a different facility or something. The accident had involved massive body pain to the point where any movement of this family member of mine was extremely painful.
They put this family member on a stretcher or something and brought them into a moving vehicle. I don’t remember exactly the details if my family member said something before they left or after they got somewhere like, “Where are you taking me?” That’s when they realized they had the wrong patient. My family member was suffering because of a mistake.
Sometimes, to your point, you can be that person and not ask questions because you’re assuming that they’re doing what they need to be doing. You’re assuming that they didn’t mistake you for someone else. It’s so easy for these things to happen. I think sometimes when we hear them in stories like you’re sharing, it’s easy to say, “That’ll never happen to me.” When it happens to you or one degree away, like you and I have both experienced, it’s not as easy as you think to avoid these things.
Something else that came up earlier, Melissa, that I wanted to go back to that I can also relate to and didn’t know what to do myself. I’m curious about your advice or perspective. Another mystery of my body is I seem to have food intolerances. I’ve had several allergy tests, and doctors have told me I’m not allergic. I went through a round of testing and went to see a specialist, and it was such a horrible experience.
I could go on and on about all the bizarre treatment I received. I somehow ended up looking at their reviews online. Melissa, I realized almost every review was telling a similar story. These people are posting online about their bad experiences with their doctors. I kept wondering, “How are these doctors still able to practice?”
I haven’t left a review yet. I’m still trying to decide what I would want to say, and I’m thinking, “How many people are like me who also had a bad experience and haven’t even shared it yet?” I’m assuming that most people are having a poor experience like I did and yet it’s still happening over and over again. How does that continue? How are doctors able to get by?
There’s not a lot of accountability. That’s the problem. For the situation with my dad, he had end stage congestive heart failure. He was terminal. His healthcare proxy was he wanted to die at home. He was a 50-year fireman, so he even had a ride. An ambulance was willing to pick him up. Over the course of four days, we put hospice, palliative care, social worker, everybody on notice, “Come on, let’s get the ball rolling. My dad wants to go home.” This started the day after Christmas. On the 26th, we got the ball rolling. Nothing happened.
Next day, he still wants to go home, but I could see he’s starting to decline. “Come on, guys, we need to get this ball on the road.” Come Wednesday, again, he’s getting worse. My dad would never be honest with pain because he is that man’s man. When they asked him what his pain level was, he said, “8 out of 10.” From my dad saying 8 out of 10, that meant it was 20. I asked the nurse for Tylenol, and she told me it would be three hours. At that point, besides watching my dad actively die, I would say I probably had three panic attacks in my life. I probably had a panic attack because I was in the bathroom. I kicked the door shut. The nurse was right there. It wasn’t my best moment, but I lost it.
I had Tylenol in my pocketbook, and you’re going to tell me it takes three hours because you’re doing a shift change. That’s not acceptable. Roll the tape forward. The hospice coordinator was two doors down from my dad’s room. Three times on that day, I knocked, “Any updates?” My sister would text, “We’re trying to work it both ways.” They would say, “We’re working on it.” No answers. Ignoring us. This is the New Yorker in me. I told my sister, “Watch. I’m going to go plant myself by the elevator. Her day ends at 4:30. I bet she leaves and she does not get back to us.”
Sure as s***, I sit by the elevator, see her with her jacket and pocketbook, and she’s leaving. I’m like, “Excuse me, remember me? What’s going on with my dad? What’s taking so long? He’s suffering.” Now she can’t leave, she’s got to talk to me, we’re this close together. She said, “We’re going to get you a private room.” I said to my sister, “We’re not going home.” She’s like, “BS.” I’m like, “Alicia, we’re not going home.” We didn’t go home. The biggest issue was my dad was rapidly declining, rapidly in organ failure. They got him a private room.
If you’ve ever seen somebody actively die, it’s horrible. That’s what hospice is for. That’s what comfort meds are for. They’re to help you move through death without suffering. A little less than 48 hours into having the private room, no comfort meds. At Thursday night around 11:00, I begged the nurse to call the on-call doctor and said, “Can you please call him in or something?”
He had already had what they call the death gurgle. He had the agitation. It was horrifying. She got an Ativan called in. That’s a benzodiazepine. It was a pill. My dad lost the ability to swallow. Why the freak did you call in a pill? She tried to buy time. She looked my sister and me in the face and said, “It’s not the death gurgle. It’s coming from his lungs.” It is not coming from his lungs. We saw it with my mother. It’s a known thing. It was absolutely not.
The next morning, the head nurse comes in, and I had my head in his hand. I had been crying all night. My sister went to let his dog out. She said to me, “I wish you and your sister had made this decision yesterday.” My head exploded. I’m like, “We made this decision on Monday. You put a DNR bracelet on him. You took off his cardiac monitor on Monday. It’s Friday morning at 8:00. Are you out of your mind?” She left the room pretty quickly, and probably a good thing she did.
Palliative care came up, nurse practitioner, and she took one look at me, took one look at my dad, and she’s like, “I’ll call the meds in now.” I said, “How long?” She’s like, “Five minutes.” I’m like, “No, really, how long? The pharmacy’s two floors down.” She’s like, “Five minutes.” It took about an hour. I had already seen probably the worst of the worst. It was so bad that I put my phone on and I was playing music. It was music that I thought he would like, ‘50s music to drown out the noise of him dying.
He passed away. I wrote to the hospital. This is another tip for anybody who’s reading. Most hospitals are on electronic files and they’re available in a portal. Get those files yesterday. Download them yesterday because if something happens like to me and my dad, you will need those files if you write a letter and try to hold people accountable for failing.
I wrote a letter to the CEO of the hospital. I highlighted all his medical records. They did get back to me and say that they did mess up. They failed to manage his pain. They tried to use an excuse saying that we started offering hospice to our community, which is a bunch of s*** because they actually have an award on their website in 2019 for palliative care. Hospice has been accepted for Medicare since 1982. It’s not something new. It’s not a new treatment. It’s not an experiment.
Quite frankly, it’s unforgivable. It’s unforgivable that he suffered. He didn’t deserve it. Those doctors that failed, that hospice coordinator that failed, that social worker that failed to do their job need to be held accountable. In having discussions with these people, you get letters from the patient advocate. The patient advocates are nice people. They try and do the right thing. I’ve gotten about six apology notes from different patient advocates. I called one of them up and I’m like, “I know you’re doing your job and I know you’re just the messenger, but you do not have the ability to make change. You’re just the messenger. I appreciate your sorry, but quite frankly, it’s too late.”
I’m still going back and forth with them because I am not going to let them get away with it. It was grave error. There’s something called the Patient’s Bill of Rights. I don’t know the exact number of them. Maybe there are twenty. If there are 20, they did not do 17 of them. There are things called standards of care. They did not adhere to the standards of care. While it would be much easier for me to grieve and go away, it’s not fair. It’s not fair to anybody else that I know or other families because they’re going to go through the same thing. It’s a high probability. The same thing is going to happen to them in one way or another. If nobody speaks out, then change doesn’t happen.
In one conversation, one of them asked me, “What can we do to make this right?” I said, “I was a manager for ten years in Corporate America. I had to do three terminations, which I hated because I hate messing with people’s livelihoods and families. Realistically, in my opinion, these doctors should not practice medicine. This social worker should lose their job. This hospice coordinator should lose their job. My dad suffered because they did not do their jobs.”
It’s still an ongoing issue with me. I’m not going to stop until I feel like his suffering was not in vain because it’s not fair. People don’t realize that, again, when things like this happen, it’s not easy to write a letter. Some people don’t have it in them, but you have to because it’s the only way you’re going to see change. Those grave errors are not okay.
At one point, after they had given us the comfort meds, one of the groups of doctors we were dealing with for the week took my sister and me in the patient lounge and apologized to us. They’re like, “This should have never happened.” It was too late. I sat there and watched and held him and begged and cried and did everything possible to try and comfort him. That’s my dad. That’s somebody you look up to. In your family, that’s the strong guy. To see him in that state, helpless. I almost, to a point, feel like I failed him because I couldn’t get the job done. I’m a big mouth. I’m a bitch. I will not stop. I feel like I failed because he did suffer. I got to live with that. I also know that I’m not going to let it go either until things change. That’s going to be what’s going to be.
First of all, I want to thank you for the advocacy. You are making a difference right now through this conversation, even if it’s just me. I want to ask, Melissa, given the weight of these experiences, these are traumatic things. You’ve shared stories of your personal experiences with the medical system and your parents. How do you handle this? How do you navigate your own mental health given the weight of all of this, given all these big emotions?
After my mom passed, I was textbook depression, acute anxiety, PTSD just from watching. I’m talking to you right now and I see her on the couch dying. Those images never leave your brain. I have a Master’s in Psychology and I worked in psychiatric emergency rooms and step-down houses and other things. I was naive and dumb, and I did not seek treatment from a professional because I thought I could do it myself. That was one of the biggest mistakes I could have made because I wound up messing up at so many levels.
I got down to 115 pounds. I had a grand mal seizure because I didn’t sleep. I was not sleeping because the scene was constantly going on in my brain. It took me probably a year to go see somebody. I tried grief groups after she passed, and it was good. The only problem with that therapy, and I’ve run group therapy and it’s very effective, but in my situation, every time I went, it was like every Tuesday of the week, it was almost like if you’re going to an AA meeting. “Hi, my name is Melissa and this is how my mom died.” I did it for about a month, but it was too much for me because I had to keep starting from square one.
I did go to a psychiatrist, and I wound up staying with her for six years. She was very helpful. I’m glad that I did go see her. My sister handled the loss of my mother much better than I did. My dad handled the loss of my mother much better than I did. I was angry for a lot of years. When I mean angry, I remember one day I came home from the hospital and it was late at night, and I had a toddler at the time, and my husband asked me a question. I was so in my head of what was going on. He asked me, “Does it bother you when I talk to you?” I said, “Yeah.” I was like a complete bitch. People knew at my job that were tiptoeing around me because I would snap at any minute.
I got into arguments with people driving to work. I was a s*** show. My friends and my family saw it, and everybody was worried about me. I eventually did get the help that I needed to get. It was effective. As far as what happened with my dad, I think that I’m able to handle it better because it’s years later. It doesn’t suck any less but once you lose one parent, that’s the biggest shock. When the second parent goes, I don’t want to say it’s less of a shock, but it’s a little easier because you’ve been through it. My mom’s was totally different because it was eight months of watching her fail from cancer. My dad’s was from December 13th to December 30th, so it was quicker.
The difference was when my mom passed, she was in hospice in the home. My sister and I were managing. The nurse came once a day. With my dad, I don’t know if it was because he’s a man or if it was because of the nature of his disease or the nature of how organ failure affects the body, it was a lot more traumatic in watching just because of the nature of how he died. I have talked to 30-year hospice nurses. I’ve done podcasts with intern doctors and told them what happened, and they have no words for it. They’re like, “I can’t believe this happened. How the hell did they make that big a mistake?”
It hasn’t been easy but you figure it out. Everybody grieves differently. You get those moments that hit you between the eyes when you least expect it. I also have a son. I have to be strong for him. He’s such a good kid. My dad’s funeral was like a fireman’s funeral, which was wonderful but it pulls at your heartstrings even more because it’s so formal. The firetrucks, the people in uniform, the flag, all that stuff is huge. He was my rock. My husband was my rock too, but my son was my rock. I guess I’m lucky to be surrounded by people that love me. The only way I can answer that is that I’ve been through it and that’s how I figure it out, I guess.Everybody grieves differently. Click To Tweet
That leads me to something else that was coming up as you’re sharing that, which is there might be people who are reading who have gone through this and they can relate. There might be people who are reading this and feeling afraid of going through this, but grateful that you’ve been through it to share some tips as you do in your book, Not in Vain, as you do on your website, as you do when you’re speaking on podcasts or interviews.
The other question I would love to know, especially because it relates to my life right now, is how to support someone else when they’re going through this. I shared with you privately how a family member of mine is going through a tough time, without getting into details publicly, I am likely going to see this family member. I’ve been wondering how can I show up for this family member. While you might not be able to answer that because everyone’s different, I would love to know, Melissa, what were the most helpful ways that people showed up for you during these times?
There are the stages of grief that we learn in psychology. They say that everybody goes through them, but I don’t buy that because I think you might go through some of them, but you don’t go through them in any particular order. Sometimes you don’t go through them at all. As far as support, my family showed up. My best friend showed up. He was a fireman, so of course, all of his fireman buddies showed up. It all depends.
I know when I lost my mom, I was probably talking to my best friend on the phone every day. She would check in on me. It’s a hard balance because sometimes, in my experience, you don’t want to talk about it when you’re grieving. Also, to your point, you don’t know what to do. You don’t know what the right thing is to do and you don’t want to trigger somebody to feel worse. It’s a very fine line.When you're grieving, you don't want to talk about it. You don't know what to do. You don't know what is right and you don't want to trigger somebody to feel worse. Click To Tweet
When you’re in that line in the funeral home and everybody’s coming up to you and saying, “I’m sorry,” or “My condolences,” after the sympathy cards stop coming, then that’s when you’re by yourself. That’s when the rubber hits the road. When you’re planning the funeral, the funeral itself, the burial, the wake, all that stuff, you’re going through the motions. You’re there, but you’re not there. I can’t explain it.
I would say that there’s no right or wrong way to support somebody that’s depressed or has lost somebody. Sometimes they want to talk about it and you got to listen. Other times, it’s best to maybe change a subject and try and do something, I don’t want to say fun, because there’s not a lot of fun you have when you lose a parent. Changing things up. It sounds stupid, but it is effective. Maybe this time you go to a different restaurant or maybe this time you go to the beach or you do something that you switch up.
My mom was always the person that made Christmas. My dad, that wasn’t his gig. One of the ways that we coped with it is we switched it up. Sometimes we went to my sister’s house. Sometimes we brought food to my dad. Sometimes people came here on Easter. Instead of planning a meal for everybody to come to the house, we went out to a restaurant. Sometimes, switching things up is a good thing.
Even sending a text showing that you’re there. You might say, “I know you probably don’t feel like talking right now, but I wanted to let you know when you are, I’m here. Call me at any time,” whatever the relationship is. There’s no right or wrong way of doing it. It’s being there for that person. They may spend an hour hysterically crying with you or want to talk about what happened in the news, but the fact that you’re there is what matters.
One of my friends lost her father. Around the anniversary of his passing, I asked her how she was doing, and she started crying because she said nobody had asked her or brought up her dad since his death. It’s like you’re saying, there was that period of time. She was getting the condolences and then it stopped. It was like it never happened. It was such an important lesson because I hadn’t thought about that. Sometimes just asking how someone’s doing after a period of time to acknowledge their pain is so profound for them and rare.
It’s huge. You can’t put a price on it. There might be a million different ways you could do it, but it’s definitely huge. I can tell you anniversaries, birthdays, Mother’s Day, Father’s Day, especially the first couple of years, are tough. The other thing is I have friends my age right now that still have both parents. I say it in my book, and I’m embarrassed of it, but again, my book is totally transparent. I’m open and I do it for a reason because I want to show people they’re not alone.
After my mom passed, sometimes I would see people that were her age with somebody like their daughter sitting on a park bench. I wouldn’t get mad, but I would get jealous. I would be like, “Why did it have to be my mom?” When I thought about it, I said, “That’s so selfish. How could you even think that way? That’s messed up. You shouldn’t think that way.” I did feel that way. You’re walking through CVS and it’s Mother’s Day and the whole cards are all Mother’s Day cards, or the commercials on TV are like, “What are you doing for your mom this day?” Those are all triggers.
Unless you’ve joined the club, I want to call it, of having losing a parent, you can’t understand it. I had one friend. It was ridiculous. She’s not my friend anymore. My mom passed on December 4th. After she passed away, I was talking to this person and she’s like, “Me and my husband had a bet that she wasn’t going to make Christmas.” I’m like, “Did you just say that to me? You bet and you’re actually saying it out loud to me that she wasn’t going to make Christmas? You have both your parents right now. What the freak are you thinking?” You call it the club, but it’s a s***** club to be in. That’s life. Everybody’s going to lose. Everybody’s going to lose their parents. Unless you’ve been there, you don’t really understand it.
I haven’t joined the club yet. I think it’s helpful to hear from someone like you, Melissa, that’s sharing with so much transparency because it will happen one day, and I’m sure it will be awful. I don’t know if you can prepare for how awful it’ll be, but hearing and understanding the stories helps me have empathy and learn ways to be supportive.
I think so much of what you’ve shared is not even specific to who you’re losing or what you’re experiencing. It’s all about navigating it with some awareness with direction with a guide like you. It’s such beautiful, profound work. To me, the title of your book, Not in Vain, represents that what you’ve been through and what your parents went through was not in vain, that something is coming out of it despite the suffering. You’re pushing towards the change.
That’s my goal. In fact, you wouldn’t believe some of the messages I get from complete strangers that are like, “My son’s in intensive care and they won’t let me go in,” because it was during COVID, and this is a complete stranger. I’m like, “Okay, do this.” Somebody from England calls, “I’ve got diagnosed with ovarian cancer and I can’t start treatment for seven months.” I can’t even tell you how many people reach out to me, and I always spoke to one of them. I’m a big empath. I think it’s a gift, but sometimes it’s not so good because you forget to take care of yourself.Being an empath is a gift but sometimes it's not so good because you forget to take care of yourself. Click To Tweet
Particularly with my parents and what they went through, it was the same hospital. After my mom passed, I was pissed. I actually bought a book. I don’t know the exact title, but it was basically the day in the life of an oncologist. I was so mad at him that I felt like I had to read something more about what they do. It did give me pause because I thought to myself, “You’re in a job in which every day you have to tell an adult or a child that they have cancer, and that’s not fun. You don’t know if they’re going to make it or not. You don’t know that the treatment is going to negatively impact them and possibly kill them.”
Even though I will never forgive this doctor, I did find empathy for what his job was every day because it can’t be fun. I also include that in the book. I struggled so much. I tried to do a lot of introspection. I tried to do a lot of, “What could I have done differently?” Even in the grief department, my mom and my dad is night and day. If it was August after my mom passed away, I wouldn’t even be able to have this conversation with you without crying. Now, I’m in a different space. I think it’s because you’ve been through it. I hope you go as long as possible without having to go through it.
That’s the thing. We never know. We go through it and in so many ways. Sometimes it’s seeing the people that we love go through it as I have. Hearing your story is helpful because sometimes people don’t share a lot of details with you because they’re not ready to or don’t want to. I’m grateful for the way that you have shared these tough times, that you’ve documented it, and that you’re doing it, I’m sure on some level, for yourself to process it.
To be honest with you, when I first started talking about writing a book, my sister and my dad didn’t want it. They did not want the transparency. They did not want my mom’s suffering put out to the world. It took them a while to understand. They also needed to understand that it was not done to make money. It was not done to become rich off a book. That doesn’t happen.
When the reviews started coming in, I shared them particularly with my dad because they were great. It became a bestseller and all that stuff. The ones that meant something to me were people who had had ovarian, because they could totally relate to it, people who lost parents, people who have had depression and suffered from mental illness.
I had a choice to make when I wrote it with the editing folks that I work with because there are some f-bombs in it. I had to make a choice because that’s not for everybody. On Goodreads, one person out of all of the reviews did not like it. That’s good with me. In order for it to be authentically me, I had to write it in a way that was the way I speak. I love when I get the reviews that say, “When I read the book, it was as if me and Melissa were at a kitchen table and friends shooting the s***, just talking.” I like that. I’m happy about that because that’s what I wanted it to be. It took a while to get there, but I think I accomplished that.
You’ve definitely accomplished that with me. I love that phrase. I was trying to find the right words myself. The kitchen table is a perfect way to put it, Melissa. From the very moment that our connection through this platform switched on, I saw your face. It was this comfort level with a stranger, with someone I was meeting for the first time and spending the last couple of hours with. It put me at ease. As I said to you before we even started, I want to see more of that. I want to see more kitchen table conversations about the hard parts of life. You are embodying that.
To be honest with you, I like the way you craft your show more than a national news interview because it’s more authentic and personable. The other thing is when you get these national news five-minute segments, 1) It’s extremely stressful. 2) They could throw you zingers that you’re not prepared for. I think this is a better way to try and get through to people and to try and help them in a more relaxed, conversational platform.
I’m a big fan of Joe Rogan. I’m a big UFC fan. My son does mixed martial arts. My goal is to get on him. If you have ever listened to Rogan, that’s how he does it. He’s chill. People sit back and he lets them say what they want. He asks questions, but it’s not that hardened stop time. It’s not that hard, “You can ask these questions, but you can’t ask these.” I always say to people I’m totally transparent. I’m an open book. Ask me anything and I’ll tell you. There’s not a lot that I’m not going to share, especially if it’s going to help people.
I appreciate that. Funny enough, when I started this show in 2019, Joe Rogan’s style was exactly what I was going for. Hearing that is very affirming. Say what you might about Joe Rogan, all the controversies, but what I admire is that he’s willing to sit down and have long, in-depth, non-superficial conversations about a lot of different elements of life. I think people resonate with that depth. They don’t necessarily want the 5-minute, the 60-second, the TikTok video. I think there are a lot of people out there who are yearning for conversations with people like you, Melissa. It sounds like you are pushing towards that. Their style through the book of speaking as you are is so beautiful.
I think it’s incredible what you do when people reach out to you, the effort you put into communicating with people during some of the toughest times, if not the toughest times of their lives, Melissa. You are doing such a great service to the world. Your parents would be so proud and probably are still so proud wherever they may be in this universe.
Sometimes I joke around with my sister. I’m the fighter of the family, and I wonder what my parents are thinking. He survived thirteen years without my mom. I’m not a very religious person, but I do feel like they’re together and he’s finally happy and he got his girl back. That’s what keeps me level because even if we can’t prove it, that keeps me level.
I’m glad that you have that good feeling in your heart. I think we need that hope amongst all the darkness we can feel during these tough times navigating the medical world. Melissa, I can’t thank you enough. I hope that the reader checks out the links. There’ll be a video eventually when it gets up on YouTube. There’s a lot packed into this episode. Thank you so much, Melissa, for spending all this time with me, sharing your story and connecting with me. It has been a beautiful kitchen table conversation.
I appreciate it. Thank you. Actually, it was therapeutic for me to even have this conversation, so I appreciate that.
What more could you ask for?
About Melissa Mullamphy
Melissa Mullamphy is a masters-level psychologist, a health care expert and advocate, and a critically-acclaimed author. Always busy, ever searching for ways to improve and to help others, she received her Master’s degree in counseling psychology. Working in a psychiatric emergency room, leading various non-profit events, and running group therapy sessions gave her an insider’s view of the health care system—and the failings in how it was run (not to mention the pay scale) finally turned her to the corporate world.
Working as a Domestic Operations Manager for one of Warren Buffet’s firms, she spent the next two decades traveling the country in limousines and airplanes, enjoying fine dining, and “becoming a responsible adult.” All of which came to a screeching halt when her mother was diagnosed with cancer, thrusting her back into the world of health care—on the other side of the equation.
Caring for her mother through her terminal illness, Mullamphy got an up-close view of the failings and bad practices of the medical system. She saw evil in the neglectful and incompetent people skimming along within a healthcare structure that preferred almost everything over the patients and witnessed heroism in good people trying their best to help in a system they knew was hopelessly broken.
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