My "nobody quite believes me" diagnosis is Ehlers-Danlos Syndrome. The compassionate rheumatologist who finally diagnosed me said, "This diagnosis solves nothing, but explains almost everything." It was on me to communicate my EDS to practitioners down the line. But many of them don't understand it, don't believe me, question the diagnosis, or just shrug. I think my age (75) has something to do with it just an old lady with a lot of pain & complaints. My new PCP does believe me, and has been helpful. She referred me to a PT with special training in hypermobility issues, and I'm finally addressing the bad shoulder that I identified weeks ago as my "one thing". Fingers (carefully) crossed.
Same situation here—SO frustrating! I’m 39 and it took me years to convince any doctor that the aches I was describing weren’t coming from lifting up my kids…
I am loathe to even write this because I have given up ever being believed. I went through an excruciating period of time with Morgellon’s. Absolutely crazy symptoms and I was terrified. Terrified about what I was experiencing, knowing it sounded implausible and no would believe me. Had to pretend it wasn’t happening. What can one say about this when no one believes it’s real? Lost my sanity, was diagnosed with connective tissue lupus when my inflammation markers were off the charts. Yes, I have lupus, but I also had Morgellon’s which exacerbated the lupus.
I wanted with all my heart for my husband's symptoms-dizziness, balance issues, sensitivity to light, vision changes, the list goes on .... were alll linked back to an old positive Lyme/anaplasmosis test result--and also a concussion. I wanted it so much, I forked over thousands of $$$$ out of pocket for IV antibiotic treatments, herbal tinctures that tasted like goblin spit, vision rehab therapy for potential post-concussive syndrome, exorbitant prescription prism glasses and hyperbaric oxygen therapy we had to pay cash for...?. As it turned out, he had and died from a rare progressive neurological disease called PSP (Progressive supranuclear palsy), a disease so diabolical it's no wonder no doctor was willing to suggest it before they could be certain, which is apparently impossible until a postmortem brain exam. One naturopathic doctor mentioned Parkinson's early on, but, in an enormous gesture of denial, I dismissed him as incompetent. Oops.
I'm so sorry that you and he went through this painful journey. It sounds like he had a wonderful partner & companion in you, and that you did the best you could with all of the conflicting ideas & opinions. Sending positive thoughts & hopes for healing & grace for you.
Thank you for this great story Lucy....I so appreciate that you take the time to understand the patient and solve the problem on the premise that the patient's complaints are valid--- whatever the source... Brava!!
Goodness, this is exactly what is missing most often… the thorough analysis! And still I find, women are more often sidelined than men! Well done( again) you♥️
When I got diagnosed with Epstein-Barr at 21 (after 2 years of significant fatigue and six months of not being able to get out of bed without tears and Herculean effort, not to mention the joint pain, fevers, sore throats, etc.), the doctor who ran the test basically said it wasn't real. And the doctor was a woman.
Then, a client at the salon I was working part-time at while going to art school overheard me sharing my diagnosis. She, too, had EBV and referred me to an OMD who mixed me up a batch of herbs that ended up looking like dirt (and sort of tasted like it). He told me to give up dairy (it's a foreign protein your body doesn't recognize so your immune system fights it as you digest it). He helped me get better, get my symptoms manageable and into "remission" with very few flares. (I sent other friends with autoimmune issues, like Crohn's and psoriasis, to him and he worked miracles for them, too. RIP, Dr. Matt.)
That was 30+ years ago. Has one of my MDs taken EBV seriously? Nope. When I describe my fatigue, my migraines and gastritis, and their persistence, not much we can do because all my blood work is normal and I don't have H-pylori, so (insert shrug emoji here). But blood work is based on men. Women are the ones with autoimmune issues for the most part. And because everything is "normal", it must be in our heads. We are just hypochondriacal, attention-seeking. By the way, have you tried meditation and mindfulness? Beyond frustrating.
I've been my own lab rat over the decades, trying to figure out what works for me. The Autoimmune Solution helped. She's a little heavy-handed on the supplements, but removing grains, nuts, eggs and caffeine from my diet (along with the long-ago kiboshed dairy, and I haven't had red meat since Live Aid), has made a difference (although, I started up on matcha this year; no regrets). Exercise makes a difference. Taking weekend naps makes a difference; excited when I don't need one.
People turn to alternative medicine because we need an alternative. I fully believe in science, but the science isn't always there, because women are under-studied, under-researched and very much ignored because men/the patriarchy doesn't understand us, because they don't research or study us. It makes one dizzy. So I understand when someone clings onto a non-fact to explain how they got where they are. A darling friend with actual Lyme disease (didn't see the tick, but I did see the "bullseye") fell down the rabbit hole of the Medical Medium and no longer believes in traditional medicine. Heartbreaking. Even my OMD wanted me to get on antibiotics when I came in for a scheduled appointment with an upper respiratory infection (as one with allergies and asthma, that wasn't anything new). I said I didn't want to. He gave me herb dirt, and said if I wasn't better in 3 days, to go see my GP. It was gone in 2.
There is middle ground between science and woo. It's where many need to be met. Not enough physicians are humble enough, open enough, curious enough to take a look. Because that's the way medical science is taught, right? Rely on the research. But when the research doesn't exist or isn't based on your gender, what then?
It's great that you stood by your patient and found the answers. Thank you. xo
I could speak at length about this. Post viral illness changed my entire medical practice, and even interrupted it. I speak with patients every day who desperately need their physicians to take the time and care you describe to investigate, not simply conclude. Sometimes it's one unifying diagnosis that was missed; sometimes it's several things.
I had primary hyperparathyroidism. Dismissed, minimized and told it was all just part of aging because my symptoms were vague and the doctors didn’t look deeper. It led to severe osteoporosis before I was properly diagnosed, had parathyroid surgery and got on osteoporosis medication. A very difficult and frustrating experience. Thank you for doing what you do!
In her late 60s, she developed a bout of worsening constipation. She had had issues before and even had a colon resection years prior due to diverticulitis, so it was not a completely new issue for her, but she had always been able to manage it well.
She went to her doctor, who prescribed fiber, stool softeners, laxatives, metamucil, etc. She searched online and bought a squatty potty toilet stool to "help gravity" as she put it. She was never one to complain so we had no idea how bad it was until she took herself to her small town ER.
They took her by ambulance to a larger hospital where each day a new hospitalist would come in and ask if she went to the bathroom yet. None of the doctors seemed to be communicating; none had a plan. They put a feeding tube in her nose.
After 4 days in the hospital with the awful tube in her nose and constant belly and back pain, she had a mini meltdown in front of me and my brother when yet another doctor came in on daily rounds, seemed to somehow blame her for her issues, and walked out with no plan.
My brother had been working in medical equipment sales and knew one of the GI doctors in the hospital network. He called him and pleaded for help, explaining everything. That doctor put everything into motion, and had my mom in exploratory surgery the next morning. She had a bowel obstruction--the blockage caused from scar tissue from the previous colon surgery.
Sad that it took not what you know, but who you know to get the correct medical care.
I have had a lifetime of mysterious symptoms…. And a mysterious sequence of growths so odd that the doctors who removed them would bring a group of students into the room to guess what each one was. Doctors hated to see me - one <now EX> primary actually yelled “you are too complicated!” They would do the usual labs, see nothing and send me home. Everyone, including my family, thought I was a hypochondriac.
It was an integrative care doctor who refused to give up. She ordered labs I’d never heard of, and every one came back highly abnormal. She worked through half a dozen diagnoses, one by one, with good results. But she still felt there was “something else” and sent me to a hematologist who specialized in something called Mast Cell Activation Syndrome. In one two-hour visit, he told me that he would wait for labs but that I was a classic case of MCAS. Now, two years later, I am still on many medications, still experiencing new symptoms of MCAS, and I tell every doctor I see about this under-diagnosed inflammatory disorder!
And I try hard not to puzzle the other doctors I see. As a result, I am a Community Teacher for small groups of interdisciplinary students at the University of Minnesota medical schools. They learn about MCAS as part of a class assignment to interview an older person with a chronic disease. I do my best to make sure that in the future when they see a patient with “normal” labs who has a long history of multi-system symptoms, they will not yell at them or dismiss them as hypochondriacs!
I lived in limbo for many months with more and more ultimately debilitating symptoms. My doctor treated each symptom separately and didn't see the whole picture. He told me he'd figure it out... ultimately, my boss at work (the big boss) called me to his office and told me the entire office was concerned about me. He set me up with his personal physician, an older man ready to retire, who diagnosed me almost on the spot just doing a regular exam with his stethoscope and looking into my eyes with an ophthalmoscope. Never forgot his words to a 24 yr old (me), "honey, you're dying". Look at the person not just the symptoms because separately they were apparently easier to explain away. Dx: Endocarditis.
The moral of your story is that in a brief or anonymous medical appointment, hoofbeats are always assumed to be horses. Sometimes an unrecognized zebra has entered the clinic. Unfortunately for most of us, excellent diagnosticians like you are also zebras, in the medical herd.
In life, not only in the field of medicine (or in doctor/patient conversations): The questions posed are almost-always more important than the answers (Talmudic logic). :)
The power of listening....it's not just about the history. So much of what drives profits for profiteers is the sense that someone finally takes the time to acknowledge that something is wrong.
This is a wonderful story that illustrates several things — the danger of in-and-out medicine, the complexity of a doctor’s role when performed well, and the importance of getting to the right question so the correct issues can be uncovered. Thank you so much for sharing!!
My "nobody quite believes me" diagnosis is Ehlers-Danlos Syndrome. The compassionate rheumatologist who finally diagnosed me said, "This diagnosis solves nothing, but explains almost everything." It was on me to communicate my EDS to practitioners down the line. But many of them don't understand it, don't believe me, question the diagnosis, or just shrug. I think my age (75) has something to do with it just an old lady with a lot of pain & complaints. My new PCP does believe me, and has been helpful. She referred me to a PT with special training in hypermobility issues, and I'm finally addressing the bad shoulder that I identified weeks ago as my "one thing". Fingers (carefully) crossed.
Same situation here—SO frustrating! I’m 39 and it took me years to convince any doctor that the aches I was describing weren’t coming from lifting up my kids…
I am loathe to even write this because I have given up ever being believed. I went through an excruciating period of time with Morgellon’s. Absolutely crazy symptoms and I was terrified. Terrified about what I was experiencing, knowing it sounded implausible and no would believe me. Had to pretend it wasn’t happening. What can one say about this when no one believes it’s real? Lost my sanity, was diagnosed with connective tissue lupus when my inflammation markers were off the charts. Yes, I have lupus, but I also had Morgellon’s which exacerbated the lupus.
Analysis and diagnostics. Looking at the whole picture.
Thank you for this.
I wanted with all my heart for my husband's symptoms-dizziness, balance issues, sensitivity to light, vision changes, the list goes on .... were alll linked back to an old positive Lyme/anaplasmosis test result--and also a concussion. I wanted it so much, I forked over thousands of $$$$ out of pocket for IV antibiotic treatments, herbal tinctures that tasted like goblin spit, vision rehab therapy for potential post-concussive syndrome, exorbitant prescription prism glasses and hyperbaric oxygen therapy we had to pay cash for...?. As it turned out, he had and died from a rare progressive neurological disease called PSP (Progressive supranuclear palsy), a disease so diabolical it's no wonder no doctor was willing to suggest it before they could be certain, which is apparently impossible until a postmortem brain exam. One naturopathic doctor mentioned Parkinson's early on, but, in an enormous gesture of denial, I dismissed him as incompetent. Oops.
I’m so sorry about your husband-my grandmother died from PSP about two years ago. Diabolical is an apt description.
I'm so sorry that you and he went through this painful journey. It sounds like he had a wonderful partner & companion in you, and that you did the best you could with all of the conflicting ideas & opinions. Sending positive thoughts & hopes for healing & grace for you.
Thank you for this great story Lucy....I so appreciate that you take the time to understand the patient and solve the problem on the premise that the patient's complaints are valid--- whatever the source... Brava!!
Goodness, this is exactly what is missing most often… the thorough analysis! And still I find, women are more often sidelined than men! Well done( again) you♥️
Very nuanced and helpful and relatable read!!! Thank you ❤️❤️
When I got diagnosed with Epstein-Barr at 21 (after 2 years of significant fatigue and six months of not being able to get out of bed without tears and Herculean effort, not to mention the joint pain, fevers, sore throats, etc.), the doctor who ran the test basically said it wasn't real. And the doctor was a woman.
Then, a client at the salon I was working part-time at while going to art school overheard me sharing my diagnosis. She, too, had EBV and referred me to an OMD who mixed me up a batch of herbs that ended up looking like dirt (and sort of tasted like it). He told me to give up dairy (it's a foreign protein your body doesn't recognize so your immune system fights it as you digest it). He helped me get better, get my symptoms manageable and into "remission" with very few flares. (I sent other friends with autoimmune issues, like Crohn's and psoriasis, to him and he worked miracles for them, too. RIP, Dr. Matt.)
That was 30+ years ago. Has one of my MDs taken EBV seriously? Nope. When I describe my fatigue, my migraines and gastritis, and their persistence, not much we can do because all my blood work is normal and I don't have H-pylori, so (insert shrug emoji here). But blood work is based on men. Women are the ones with autoimmune issues for the most part. And because everything is "normal", it must be in our heads. We are just hypochondriacal, attention-seeking. By the way, have you tried meditation and mindfulness? Beyond frustrating.
I've been my own lab rat over the decades, trying to figure out what works for me. The Autoimmune Solution helped. She's a little heavy-handed on the supplements, but removing grains, nuts, eggs and caffeine from my diet (along with the long-ago kiboshed dairy, and I haven't had red meat since Live Aid), has made a difference (although, I started up on matcha this year; no regrets). Exercise makes a difference. Taking weekend naps makes a difference; excited when I don't need one.
People turn to alternative medicine because we need an alternative. I fully believe in science, but the science isn't always there, because women are under-studied, under-researched and very much ignored because men/the patriarchy doesn't understand us, because they don't research or study us. It makes one dizzy. So I understand when someone clings onto a non-fact to explain how they got where they are. A darling friend with actual Lyme disease (didn't see the tick, but I did see the "bullseye") fell down the rabbit hole of the Medical Medium and no longer believes in traditional medicine. Heartbreaking. Even my OMD wanted me to get on antibiotics when I came in for a scheduled appointment with an upper respiratory infection (as one with allergies and asthma, that wasn't anything new). I said I didn't want to. He gave me herb dirt, and said if I wasn't better in 3 days, to go see my GP. It was gone in 2.
There is middle ground between science and woo. It's where many need to be met. Not enough physicians are humble enough, open enough, curious enough to take a look. Because that's the way medical science is taught, right? Rely on the research. But when the research doesn't exist or isn't based on your gender, what then?
It's great that you stood by your patient and found the answers. Thank you. xo
I could speak at length about this. Post viral illness changed my entire medical practice, and even interrupted it. I speak with patients every day who desperately need their physicians to take the time and care you describe to investigate, not simply conclude. Sometimes it's one unifying diagnosis that was missed; sometimes it's several things.
I had primary hyperparathyroidism. Dismissed, minimized and told it was all just part of aging because my symptoms were vague and the doctors didn’t look deeper. It led to severe osteoporosis before I was properly diagnosed, had parathyroid surgery and got on osteoporosis medication. A very difficult and frustrating experience. Thank you for doing what you do!
Not me, but my mom.
In her late 60s, she developed a bout of worsening constipation. She had had issues before and even had a colon resection years prior due to diverticulitis, so it was not a completely new issue for her, but she had always been able to manage it well.
She went to her doctor, who prescribed fiber, stool softeners, laxatives, metamucil, etc. She searched online and bought a squatty potty toilet stool to "help gravity" as she put it. She was never one to complain so we had no idea how bad it was until she took herself to her small town ER.
They took her by ambulance to a larger hospital where each day a new hospitalist would come in and ask if she went to the bathroom yet. None of the doctors seemed to be communicating; none had a plan. They put a feeding tube in her nose.
After 4 days in the hospital with the awful tube in her nose and constant belly and back pain, she had a mini meltdown in front of me and my brother when yet another doctor came in on daily rounds, seemed to somehow blame her for her issues, and walked out with no plan.
My brother had been working in medical equipment sales and knew one of the GI doctors in the hospital network. He called him and pleaded for help, explaining everything. That doctor put everything into motion, and had my mom in exploratory surgery the next morning. She had a bowel obstruction--the blockage caused from scar tissue from the previous colon surgery.
Sad that it took not what you know, but who you know to get the correct medical care.
That she had a documented surgery and not one doctor considered scar tissue is shocking. I hope your mom is doing much better, Lisa. xo
I have had a lifetime of mysterious symptoms…. And a mysterious sequence of growths so odd that the doctors who removed them would bring a group of students into the room to guess what each one was. Doctors hated to see me - one <now EX> primary actually yelled “you are too complicated!” They would do the usual labs, see nothing and send me home. Everyone, including my family, thought I was a hypochondriac.
It was an integrative care doctor who refused to give up. She ordered labs I’d never heard of, and every one came back highly abnormal. She worked through half a dozen diagnoses, one by one, with good results. But she still felt there was “something else” and sent me to a hematologist who specialized in something called Mast Cell Activation Syndrome. In one two-hour visit, he told me that he would wait for labs but that I was a classic case of MCAS. Now, two years later, I am still on many medications, still experiencing new symptoms of MCAS, and I tell every doctor I see about this under-diagnosed inflammatory disorder!
And I try hard not to puzzle the other doctors I see. As a result, I am a Community Teacher for small groups of interdisciplinary students at the University of Minnesota medical schools. They learn about MCAS as part of a class assignment to interview an older person with a chronic disease. I do my best to make sure that in the future when they see a patient with “normal” labs who has a long history of multi-system symptoms, they will not yell at them or dismiss them as hypochondriacs!
I lived in limbo for many months with more and more ultimately debilitating symptoms. My doctor treated each symptom separately and didn't see the whole picture. He told me he'd figure it out... ultimately, my boss at work (the big boss) called me to his office and told me the entire office was concerned about me. He set me up with his personal physician, an older man ready to retire, who diagnosed me almost on the spot just doing a regular exam with his stethoscope and looking into my eyes with an ophthalmoscope. Never forgot his words to a 24 yr old (me), "honey, you're dying". Look at the person not just the symptoms because separately they were apparently easier to explain away. Dx: Endocarditis.
Great diagnostician with severe lack of bedside manner. What doctor says “Honey, you’re dying”?
You’re still here to tell the story so hopefully you are well now, thanks to him.
The moral of your story is that in a brief or anonymous medical appointment, hoofbeats are always assumed to be horses. Sometimes an unrecognized zebra has entered the clinic. Unfortunately for most of us, excellent diagnosticians like you are also zebras, in the medical herd.
Thank you for this excellent (as usual) post.
In life, not only in the field of medicine (or in doctor/patient conversations): The questions posed are almost-always more important than the answers (Talmudic logic). :)
~RD
The power of listening....it's not just about the history. So much of what drives profits for profiteers is the sense that someone finally takes the time to acknowledge that something is wrong.
This is a wonderful story that illustrates several things — the danger of in-and-out medicine, the complexity of a doctor’s role when performed well, and the importance of getting to the right question so the correct issues can be uncovered. Thank you so much for sharing!!