“Medical gaslighting is real,” according to a recent New York Times article–and to this month’s interviewee, the gracious and courageous Marian Adams. I met Marian through a dear mutual friend Jeanne Stafford and will be forever grateful for the introduction. (you can see my  interview with Jeanne here)

Medical gaslighting, or “having one’s concerns dismissed by a medical provider,” disproportionately affects women, people of color and members of the LGBTQ community and often leads to serious and unnecessary suffering. Marian Adams so generously agreed to share her three-year medical gaslighting nightmare with me and with WomanPause readers. She wants nothing more than to educate women and help them avoid the trauma that she experienced. I thank her with all my heart.

Diane: Welcome, Marian! I’m so excited to talk to you today. You have an incredibly important story to share. Can you give a little background?

Marian: Up until I was about 51, I had been a vibrant, healthy, athletic, capable person. But around that time, I started to “Not feel like Myself.” I lost confidence. For instance, one day my family was at the annual Army Navy football game—we are huge Navy fans, so it’s a very big deal for us. Our children were seated an aisle or two away, so my husband would go back and forth between our seats and theirs, which is completely normal! But I remember thinking maybe I wasn’t being any fun. I was getting a little paranoid that maybe he didn’t want to sit beside me.  Looking back, that was one of the first signs of my becoming insecure and not feeling the joy that I feel so much of the time.

Then I stopped sleeping. I don’t mean I was tossing and turning. I mean, when my husband arose each morning at 5:00 A.M., I still hadn’t slept yet. The fatigue was crippling. Then one day I came down to have my ritual coffee in the morning, which I’ve enjoyed every morning for 32 years, and I didn’t want to drink it. I couldn’t. Nor could I eat. I went from 125 to 104 pounds. I started crying anywhere, calling relatives from public rest rooms. My hair began to fall out.

I started going to church in the mornings, lighting candles for myself, all the while trying to pretend that everything was okay.

 

“She Told Me There’s No Measurement, The Diagnosis Is Based on Questions and Answers”

 

Diane: It must have been terrifying.

Marian: Terrifying.

Diane: And you never told anybody how you were feeling?

Marian: Only a close relative, who was so concerned about me that she recommended I see a psychiatrist.

Diane: I could see that that might be step one.

Marian: Yes. The psychiatrist and I spoke for about an hour. She sent me home with some lengthy questionnaires. When I went back to see her, she said I had depression. “How do you know that?” I asked. “Well, your serotonin must be very low, therefore, it’s difficult to feel happy.” I remember putting my arm out and saying, “let’s measure it.” She told me there’s no measurement, that the diagnosis is based on questions and answers. So, there was my label: depression.

Three years later, I was on a national radio show, speaking to a psychiatrist. He said, “in my field, we have to learn that there’s primary depression, caused by a chemical imbalance in the brain, and secondary depression, caused by a myriad of other things with symptoms that mimic those of primary depression. There is no physical diagnostic tool, blood test, or scan to measure this yet, but we are working on it.”

 

“I Started Hiding the Saphris Because I Was So Terrified of Not Sleeping”

 

Diane: It’s so interesting that you’ve come into my life at this time. I recently interviewed Sarah Fay, who wrote the book Pathological: The True Story of Six Misdiagnoses. She talks a lot about the lack of objective measures for psychiatric diagnoses. It’s troublesome. And here you are, you get this diagnosis of depression. Did it feel right at the time?

Marian: The change in me was so drastic—I’d never felt anything like this before—so I believed it. She prescribed Saphris to help me sleep and Lexapro to elevate my mood. I will say that for a short-lived time, I felt better primarily because I was sleeping. And of course, 5 milligrams of Lexapro will probably make anybody feel better, but it was just a Band-aid.

After a few weeks of taking the nightly Saphris, I began making strange, distorted movements with my mouth and jaw. I had no idea I was doing this. My husband would ask, “what are you doing?” It was a side effect of the Saphris. But it helped me sleep! When my husband insisted I stop taking it, I started hiding the Saphris because I was so terrified of not sleeping. I was prescribed Ambien and Lunesta—nothing. Nothing helped. Nothing. Nothing.

I have a long list. Probably 10-12 different antidepressants over about eight months. And I wasn’t getting better.

I finally emailed my internist who had been caring for me for over 30 years, but whom I hadn’t seen in a year and a half because the last time I saw him he said something offensive to me.

 

“He Interrupted His Description of Her to Say to Me, ‘You Should Get a Boob Job.”

 

Diane: Do you want to share that?

Marian: Sure. It was my 50-year-old checkup. I was happy and in charge of myself at the time.  He and I had always talked for at least 45 minutes prior to my annual complete examination. That’s a nice thing; he’s a doctor who wants to understand the whole person. But, at the time, he had a new romance in his life. He’d been divorced twice, which I knew. Sometimes I was his confessor, it was that kind of thing. He was in the lusting, fabulous new phase of a relationship and just dizzy with it. He described this very sensual woman to me—a little too much information. Then he interrupted his description of her to say to me, “you know what? You should get a boob job.”

Diane: I just can’t!

Marian: It gets worse. He adds, “if you don’t want do it for yourself, do it for your husband.”

Diane: Oh, that is wrong on so many levels.

Marian: Well, that was age 50. So now I’m almost 52. I hadn’t seen him in more that a year and a half. But I was so desperate that I emailed him. I explained that I had been diagnosed with depression and had been trying different medications for almost 8 months.

He answered, “do not despair, there is help for this.” Off I went to see him, along with a relative and my husband.

 

“I Hadn’t Had a Needle in My Arm, Peed in a Cup, Stethoscope, EKG, Nothing”

 

The first thing he said was, “you can’t be that bad, you’re keeping your hair nice and wearing your pearls.” Then I got weepy and told him, “I don’t sleep—I can’t function.”  He goes, “a lot of people think they don’t sleep, but they really do.”

Okay so, he doesn’t believe me. Then, he said, “I know the best psychiatrist.”

He never examined me. I hadn’t had a needle in my arm, peed in a cup, stethoscope, EKG, nothing since our last visit at the age of 50. He didn’t even put me on a scale.

He didn’t say, “maybe there’s something else going on,” or, “let’s make sure everything else is okay.”

But he knew the best psychiatrist. So, I went to see him.

After speaking with me alone for about 25 minutes, this new doctor said, “you have severe depression.” Not just regular depression, severe depression. Because so many anti-depressants were ineffective, he recommended that I undergo ECT, electroconvulsive therapy. We all know, One Flew over the Cuckoos’ Nest. He said that gave it a bad name and that 75% of patients “get their lives back” after ECT. My husband was totally against it.

I asked, “how do I do this?”

“Oh, it can only be done as an inpatient in the hospital.” Which, by the way, we found out later was not true.

So, I had to be admitted to the hospital. I had two children at home. My youngest was a sophomore in high school at the time. (By the way, I missed almost her entire high school career, everything.)

 

“The One Thing They Failed to Mention Was That I Would Be Admitted to a Locked Unit”

 

I think I’m going to go in the hospital, eat hospital food and watch soap operas and cable TV.   And I’m going to do it because I’ll do anything. I’ve researched it, and the only reported side effect is a very short-term memory loss. I’m like “that would be fine with me.” So, the one thing they failed to mention was that I would be admitted to a locked unit. The psych ward. We were completely stunned. A nurse asked me to raise my arms. She cut the drawstring of my yoga pants, then the laces of my running shoes.

I was supposed to do 12 rounds. They discharged me after 7. I wouldn’t sit with the group of patients or attend the art classes. I’m like “I’m not doing art therapy. That’s not going to make me better. I’m not going to ‘how to prevent falling’ class. I’m here to undergo the ECT.”

I can’t tell you how awful it was. One night I started shaking with chills, sweating. I practically crawled to the nurse. She took my temperature. I had 104 fever. My family was furious. They let me go. By the way, they also never put a needle in my arm.

Diane: They never took blood? Nothing?

Marian: I was given all these meds and shock therapy and never had a blood test. All they ever checked was my blood pressure. Every morning, patients would line up to have their blood pressure taken. If you weren’t there, which was often the case with me, they would call my name out over a loudspeaker. My husband recently said that our agreeing to the ECT was the biggest mistake of our lives.” I said ,“No, it wasn’t. The biggest mistake of our lives was just blindly trusting “the best.”

 

“I Saw 11 Doctors During This Period”

 

Diane: So, you get out, you’re not better. You’ve done what seems to be everything. What’s going on in your head now?

Marian: By the way, I saw 11 doctors during this period. I saw my longtime (30-year) gynecologist who told me he was worried about me but didn’t test hormones. He referred me to his female partner, also an ob/gyn, who did hormone testing. But no. She literally rolled her eyes when I tearfully told her how I was. I held out my arm and said, “aren’t you going to test my hormones?” Then she looked at her assistant and said, “tell her to order… (several very expensive supplements from her new web site). The supplements did nothing, and I never went back to her. Two gynecologists who did not test my hormone levels.

Upon recommendation, I also went to a local female “concierge” internist who said after my examination, “Maybe you don’t have depression. Maybe you’re sad because you don’t have any small children to care for anymore, you know, no reason to get up in the morning. Perhaps you should get a job.”

I got to the point where fatigue is not the word. It’s inability to function, have a conversation, make a decision. Then my family took the car keys away from me. I was furious.  But looking back, they were right. I shouldn’t have been driving a car.

I saw another psychiatrist who said, “I don’t think you have depression. I think your symptoms may be being caused by a neurological problem.” Off I go to another doctor, a neurologist, who orders an MRI of my brain and a spinal tap. For 3 days I had to wear metal discs all over my head, a wrap around my stomach with a monitor, and a camera set up in my room to watch me try to sleep at night. Of course, the results all came back normal. I had no neurological issues.

 

“I Immediately Knew She Was Hearing Me” 

 

So that’s the four psychiatrists, two internists, two gynecologists. I also went to an Ayurvedic doctor, who asked me to stick out my tongue and said, “I think you may have a fatty liver.”.  That’s all he had to say.

Word got out around town because I had just fallen off the face of the earth. People asked my relatives if I had cancer. Where is Marian? Our wonderful local butcher asked my husband “what does your wife have?  Tell her I am praying for her.”

I just couldn’t talk to anyone.  I couldn’t.

A woman I grew up with emailed me and said, “I heard you have depression,” and I’m like, “ugh, if she knows everybody knows.”  She had undergone TMS, Transcranial Magnetic Stimulation, to relieve her depression and it had really helped her. Doctor #10. After listening to the list of medications and treatments that had been ineffective, he diagnosed me with “treatment resistant depression” and prescribed 36 rounds of TMS. When the TMS failed, he recommended I try Ketamine.

And then one day, at a family function, another relative said, “oh, my nutritionist says blah, blah, blah…”

I thought, “I have to do something to try to get healthy.” So, I asked for her number. She’s not just a nutritionist who hung out a shingle. Dr. Carolina Sierra is an internist/endocrinologist. I went to her to get some ideas, to keep healthy nutrition-wise. She took my history and asked questions that no other doctor had asked me before. I immediately knew that she was hearing me.

I thought I was just going there just to get menu ideas.

 

“It Was Like I Rose from the Dead”

 

As she personally drew my blood, she turned to the nurse and said, “I want the following:  Estrogen, Progesterone, Testosterone, thyroid, Vitamin D, Vitamin B and Epstein-Barr.” She turns over the blood work and says, “Marian, the reason none of the medications you took, or the treatments you underwent worked, was because those treatments are for chemical imbalances in the brain. That is not what caused your symptoms.” She explained that I didn’t sleep because I had no progesterone. You cannot sleep if you don’t have progesterone. My mood and crying were because I had no estrogen. And then, no testosterone, which we gals need too. Further, I did have the Epstein-Barr virus at one point but never knew it. My thyroid was a “disaster,” and I was completely depleted of Vitamin D and B12. She said, and I’ll never forget this, “all together, you fell off a cliff.”

 

She prescribed compounded bio-dentical hormone cream, thyroid medication, prescription strength weekly Vitamin D 50,000IU, and over the counter Vitamin B-12 2,500mcg.  And the virus had left my body.

It was like I rose from the dead. It’s the little things I’ll never forget. I was sitting in the kitchen.  A painter or handyman was coming over, and my husband asked me go the bank and get some cash to pay the guy. I started to quietly weep. It was the first thing he had asked me to do in almost three years.

I swiftly came back to life. I took my mother to a foot doctor appointment. I was so happy that I could do this for her. While sitting in the waiting area, I got an email from my eldest child, a very bright and accomplished young woman, asking me to proofread her resume. Now I’m crying happy tears. These are the big things for me.

 

“I Want to Shine a Light on the Way Women Are Treated in the Doctor’s Office” 

 

Diane: Of course. How were you feeling about that lost time and the misery you and your family went through? I’m guessing there was some anger.

Marian: Of course, there’s anger. Even when I got better, it’s like taboo.

Diane: Taboo on mental illness?

Marian: Yes. “Are you sure Marian? Was it really your thyroid and your hormones?” Some people were actually defending those doctors. Honestly, it was like being victimized all over again. Only worse.

I did write to several of those doctors. The doctor who first diagnosed the depression was elated for me and thanked me for educating her on the role of thyroid and hormones. She even asked for Dr. Sierra’s contact information in the event she ever came across another patient like me. This made me feel really good.

Diane: What did Boob Job say?

Marian: I was a little more scathing in my email to Dr. Boob. I told him that had he put a needle in my arm, or referred me to an endocrinologist, I would not have lost three years of my life. He wrote back, “Glad you’re feeling better, but, respectfully, I disagree. It was not menopause or vitamin related.”

In my experience, when someone says “respectfully,” they often mean exactly the opposite. Anyway, I wrote back and said, “No doctor, you’re wrong. It was, and you know nothing about women’s health.”

Diane: What do you want to do with your story?

Marian: It sounds cliché, but if by sharing my story I help other women figure out what may be going on with them, that would give me such satisfaction. But I also want to shine a light on the way women are treated in the doctor’s office.

 

“If You Don’t Feel Right, You’re Not Right”

 

These doctors, internists and OBGYN’s, are not trained on the role of the thyroid, hormones, or vitamins. I want there to be a chart in doctor’s offices with hormones, stating their role and what the symptoms that depleted hormones can cause. And the signs of hypothyroidism and hyperthyroidism. Signs of vitamin deficiencies. It’s all well researched and documented. But 10 doctors. 10 Doctors!

Diane: What is your big dream?

Marian: I want to do a TED Talk. I would like to help educate women and tell them not to give up. I shudder to think about the number of women whose marriages fall apart, who are estranged from their families, because they’re in situations like I was.

It’s really sad when I think about women who never figure it out, were never properly diagnosed.  Proper diagnosis is paramount to proper treatment.

My heart goes out to anyone who suffers from depression, whatever the cause. There are different causes of depression. There’s situational depression, primary depression, secondary depression. Each requires different treatment.

There are so many messages. Don’t blindly trust doctors. If you don’t feel right, you’re not right.

Endocrinology should be basic, at least for women. And this is a big one—if treatment for an illness or condition is not working, it’s time to question the diagnosis!

And then there’s the treatment of women in the doctor’s office, whenever put in the “complaining woman” category. It’s just so maddening.

Diane: It is. But because of brave women like you who are willing to share their stories, there is hope for change. We all stand to learn a great deal from your experience. Thank you for sharing it here.

Marian: It is my joy. Thank you.

(And Diane, I do not have a fatty liver:)

 

As always, I’d love to hear from you. Anyone else have a medical gaslighting story? I hope not, but my guess is there are many such stories amongst us. Sending love to all.

 

See you soon!

XOXO

Diane

 

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