Gaslighting
Were you sucked in a few years ago, as I was, by the Serial podcast? They have a new season, The Retrievals, which is about a group of women who were treated for infertility treatment at Yale medical center. It’s riveting. So far there are 2 episodes, and I am hooked.
These women all experienced extreme pain during their treatment, and all were ignored. Every single one of them, no matter that they spoke up (some yelled) during their procedures, and followed up. And typical of how gaslighting works, some of them began to think that the issue was indeed with them. Perhaps the fact that they were in pain was somehow their fault.
I have an autoimmune disease, Inflammatory Arthritis, which is basically Rheumatoid Arthritis, except that I test negative for RA. The symptoms and treatment are exactly the same. I first came down with this condition almost 10 years ago, in the summer of 2014. I have no idea what brought it on. I was not particularly stressed (actually, I was on sabbatical from work, so was pretty non-stressed), I did not have any sort of illness leading into it, no change in medications (I wasn’t taking any medications). It just happened. I started with pain in one toe, which I first thought was from too many lunges, then thought might be gout. I saw my doctor, I saw a chiropractor, and neither of them knew what it might be. I had a friend come over to use our pool, and this friend has Reynaud’s disease, which is another autoimmune disease. Her husband is a physician, and while my friend and the kids were in the pool, he told me that Robyn had told him about my pain, and wanted to look at it. By this point, it had gone from a toe pain to a full on flare, where it hurt my feet to walk (the idea of crossing the grocery store because I had forgotten something could bring me to tears), it hurt my wrists to brush my hair, the thought of shaking hands with someone was terrifying. The inflammation was horrible. He told me that sometimes these things pop up, and if I were his patient, he would give me a prednisone burst and send me to talk to a Rheumatologist.
So off I went, to the Rheumatologist, and she did tests to look for markers, and diagnosed me with Sero-negative inflammatory arthritis. She gave me prescriptions for prednisone and Plaquenil. Oh goodness, the prednisone was amazing! I remember turning over in bed the first night, and feeling amazed that it didn’t hurt to turn over! What a blessing! All of the other treatments for autoimmune diseases take time, so the plan was for me to stay on the prednisone for a bit and let the Plaquenil take effect. I had a bad reaction to it, though, so she switched me to another medication, Sulfasalazine. I was on that for a few months, and it wasn’t working. The next option was Methotrexate, which I was wary of taking. I worried about suppressing my immune system. So I did some research and found another option, Minocycline. It’s an old school treatment, discovered maybe in the 1950s or so. I told my rheumatologist that I didn’t want to take Methotrexate unless I had to, and asked her to let me try this first. She was doubtful, but a kind doctor, and willing to let me try. And you know what? It worked. Slowly, as they all do. But within 8 or 9 months I was in remission, and I have been on it for perhaps 8 years now. I will never stop taking it, there are too many stories of people going off of the treatment and their inflammation coming back.
What does this story have to do with the gaslighting that the women in the podcast went through? Thankfully, not a lot. But in my research, and my involvement with an online group, Roadback, I have heard of so many people, usually women, who are dismissed when they raise their medical concerns, when they present to a doctor with pain that the doctor cannot explain. In my case, the disease is likely hereditary. There are 6 cousins, and 5 of us have similar issues. I have tested positive for a gene that predisposes one to such problems. I am the only one who has gotten a doctor to take them seriously. The others handle it with mobic or Tylenol. It’s ridiculous. Another friend suffers from Lyme, and no matter how it is treated, her pain does not go away. Her energy levels do not improve. She is a medical mystery, so they wash their hands of her and say that perhaps it is in her head.
(Ugh, what happened to my post? I just checked and it was gone, and when I looked on the backend it was in drafts, with the end missing, as well as a couple of links. Frustrating! I know it WAS here, as I have a couple of comments…)
So here I will try to sum up what the last bit of my original post said. Advocate for yourself and your loved ones. If you don’t feel heard by your doctor, remember that they work for you, and you can find a new doctor if you need to. I have been fortunate to have doctors that listened to me and were willing to let me try treatments that were not conventional if that is what I want.
20 Comments
NGS
My husband was diagonosed with celiac disease just over twenty years ago. He was very, very sick. He weighed under a hundred pounds, could barely walk, could barely keep anything down, and he was weak and just not feeling well. He was very lucky, though, because despite an early diagnosis of an eating disorder (which, to be fair, was probably accurate since eating made him sick and he just stopped eating for the most part), my FIL was a family doctor and he refused to accept that as a reason and kept insisting on more and more tests. Celiac was a relatively uncommon disagnosis at the time and it took a long time before they did a blood test as a last ditch effort and figured out what was wrong.
I bring all of this up to say that my husband is a white guy from a upper-middle class background and it was SO HARD to get this figured out.
My heart goes out to everyone who struggles with the healthcare system, be it because of the expenses, not being listened to, or just having no answers. I’m going to listen to this podcast, but I am not sure I’ll be able to get through it.
J
NGS, thank goodness for your FIL knowing to keep at it and find an answer! I have a friend with celiac, and man, that is no joke.
I worried about the podcast, I feared it would be too depressing. But thus far it is not, it is riveting.
NGS
Okay! I listened to the first two episodes. It is SO well done. The interviews with the women are so raw and powerful. My only complaint? The chanting music is KILLING ME over here.
J
Agreed on the music! Very annoying. I am so glad you’re enjoying it! I’m hooked, listened to episode 3 today, and am bummed that we have to wait 2 weeks for the next one.
Suzanne
I am SO GLAD that you found a physician who listened to you, HEARD you, and was able to get you the treatment you needed. And for the physician to try the alternate treatment you suggested too – fabulous.
My husband seems to have a lot of patients who come to him after having seen half a dozen physicians who weren’t able to help. I know he feels a lot of pressure to be the one who finally figures out what’s going on with them. But LISTENING is definitely at the core of figuring out why people are struggling, and BELIEVING them, too. I know he’s not always able to get to the bottom of the problem, despite wanting very badly to resolve these patients’ pain — or sometimes he ends up suggesting an alternative path that people may feel resistant to pursuing — but just from the very limited things he tells me, there are a lot of people who aren’t being “seen” by their doctors.
I am so glad that you have found a treatment plan and so upset about your cousins!
J
Thank you Suzanne! That has to be frustrating, to want to be able to figure out what is wrong, why a patient is in pain or suffering, and to not be able to. I’m glad your husband has that skill of listening, I think sometimes that between that and kindness, those are the two most important skills a doctor can have.
Lisa of Lisa’s Yarns
Your family members might appreciate the book ‘Invisible Kingdom’ more than I did. I appreciated it because it raised awareness about autoimmune disorders but had some issues with some of her thoughts about antibiotics and their cause of her disease. She was more of a medical mystery so her path to getting a diagnosis was very challenging. Mine (RA) was more clear cut although it was initially misdiagnosed as tendinitis. I saw a chiro for months to try to treat that and then the pain got so bad I feared I had bone cancer or something. Then I was home for a vacation and I couldn’t carry my suitcase upstairs – my dad had to do it – because I could not grasp the handle. My mom said this is not right and you have to go back to the doctor and demand an answer. A full blood panel showed that I clearly had RA. My rheumatoid factor was off the charts high, although that test alone isn’t conclusive but an examination of my joints made it clear I had RA. It was really well treated for awhile but lately it has not been good. I’m on plaquenil, sulfasalazine, Humira and now am on the highest dose of MTX that is allowed. I am separate to avoid needing infusions because I just don’t have time to spend 4-6 hours in clinic once a month. It’s too soon to say if it’s working. I had to stay on a low dose of pred to hopefully keep the flares at bay while we wait for the MTX to do its job. I don’t like being on that med but it’s kind of the last option aside from trying infusions… autoimmune diseases suck!! I am certain mine was brought on my stress. It hit the summer I was living in Charlotte 10 years ago. I did not want to move but my company gave me 2 weeks to decide and 2 months to move. I did not have the savings to roll the dice on possibly not finding another job. I had just met the man who is now my husband and did NOT want to move but I felt like I had to and God was I miserable and stressed out. So it’s not surprising my RA ‘turned on’ during that stressful, difficult time.
J
Lisa, I read your post about someone saying antibiotics causing your RA. I have no idea if that is possible, but I do know that there is antibitioc triggered lupus. I would encourage you to explore antibiotic therapy for RA, it has been a godsend for so many patients. It does not make money for doctors or drug companies. I am on the board of Roadback and have heard from doctors that the only reason they don’t prescribe it is that they can’t make a living. On the other side, there are doctors who are full stop fighting for it, and my own current doctor who, every time I see him, says, “I have several patients who do very well on this. I don’t know why we don’t prescribe this more.” But the medical association are strict, some doctors have lost their license from going against the mainstream.
San
Thanks so much for writing about a very touchy subject. I think you’re right that patients, esp. women, are easily dismissed when they raise their medical concerns and when they present to a doctor with pain that the doctor cannot easily explain. And often, their approach is more like ‘figuring out what it isn’t’ than figuring out what it is in a method of elimination. The most frustrating thing I experienced is that they often want to throw “medications” at you to see if they help without knowing what they’re treating… and I am very reluctant to just take meds for the heck of it. (I was once told that I had allergies, although I had NO common allergy symptoms, and was asked to take Benedryl. I refused. He didn’t even do an allergy test first. Turns out I had a stomach virus…. but it took multiple (!) visits for the diagnosis. It’s really frustrating to not be taken seriously.)
All this to say, I am glad you found something that worked for you and you were your own advocate.
J
San, I long for the fictional world like in Star Trek, where the doctor performs a brief scan and can tell what is wrong with you. Process of elimination is indeed a lot of it, and it’s frustrating. I’m sure it’s frustrating for doctors as well, but again, very important to find a good one who will listen to you.
nance
My mother was seeing a really lousy, lazy MALE doctor. I went with her once, and witnessed how dismissive and snide he was to her. How he barely looked at her, let alone touched her. I immediately got her a new doctor, one who specialized in the treatment of the elderly and who happened to be female. What a difference! And thank goodness I did. She was taken off at least five medications, properly tested and treated, and now that she has Alzheimer’s disease years later, I am completely confident she is receiving the best and most competent, compassionate care.
I’m glad you had success with your own advocacy, Julie. It’s important. And it’s vital to find a doctor you trust and feel good with.
J
Oh Nance, thank goodness you found a better doctor for your mom before things got so much more complicated! I think about you, and of her struggle, often. Such a difficult illness, for everyone involved.
Sarah Jedd
I have read a lot about this phenomenon at a very overview/high-level kind of angle in grad school in a feminist history of medicine course. Hearing aperson’s actual lived experience is so fascinating. Thanks for the podcast rec, too!
J
Thanks Sarah! I hope you give the podcast a listen, it’s great.
Stephany
I haven’t listened to that podcast because I think it would just infuriate me so much. I’m very lucky in that I haven’t had to deal with any of these medical mysteries myself, but one of my best friends was deeply depressed for over a decade until they realized her depression was caused by an autoimmune disease (Hashimoto’s). Can you imagine?! It’s so sad to realize how many women are being mistreated and gaslit in medical situations like this.
J
Stephany, I had no idea that Hashimotos could cause depression, but it makes sense, since you feel lousy so much of the time, and it affects your hormones. Ugh to it taking over a decade to get it figured out! I hope she is doing better now.
Ally Bean
I never listened to that podcast. It sounds intense. I know that I’ve gone to doctors who dismissed what I said was happening within me because, as a later doctor who listened to me said, I wasn’t interesting enough for the first doctors to care. I’m glad you have a doctor who is on your side and that your insurance will allow you to stay with that doctor. I’m hoping that part is true?
J
Ally, I have several good doctors right now, both male and female. The rheumatologist is so-so, not the very kind one that I started with (she changed to a different health system and I cannot see her anymore), but at least he gives me the medication I want and monitors my labwork. Sometimes you need more, sometimes that is enough. And yes, my insurance does cover it, thankfully!
Ally Bean
I haven’t received any notification in WP of your replies to my comments and have come back to your blog to see if you replied. You have, but the WP system has not told me that so that we might interact easily. Also, the first post on which I commented no longer allows for comments, the whole set-up is gone so I’m telling you this [that should be there] here.
FWIW I use Feedly to follow blogs, so I re-input your blog and now you’re showing up there again.
J
Thanks for letting me know, Ally. I wonder if there’s something in my settings. It seems strange to me that there’s a box for you to check that says to alert you to follow up emails, but then it doesn’t work?