EDS is not all in the head!
In my decades of working with people with EDS, the number one comment I get is, “my doctor will not treat me and says it is all in my head.”And lately, some physicians and psychiatrists suggest that people with EDS have lots of mental health conditions, which is harmful to the community. In the following text, I want to discuss why it’s already challenging to get good care as a person with EDS, why I very much disagree that “EDS is in your head,” and why I feel we need to be cautious seeing or listening to psychiatrists for EDS care.
In my opinion, there are many reasons why doctors don’t want to treat EDS patients. For instance:
1. Because EDS Is a multi-symptomatic genetic condition, many doctors are “specialists” and get overwhelmed when a patient discusses more than a couple of symptoms (POTS, MCAS, TMJ, GI issues, etc.).
2. Many doctors have an ego to protect and will not admit that they do not understand the EDS condition (and most do not). Moreover,
3. They do not have the time or desire to learn about it. They are OK supporting their current practice, and they and/or their administration do not want them to learn more or have them “distracted” with a complicated condition. Let’s keep it simple!
4. On top of that, the doctor’s administrations only allow them to spend 15 minutes per visit per patient, which cannot cover all the conditions of an EDS patient.
5. Insurance is very limited in covering EDS conditions.
6. Hospitals are supposed to be “non-profit”? Many hospital administrations are looking to conduct procedures for patients to charge their insurance and make more money. That is why the high emphasis is on cancer, heart disease, surgeries, etc.
7. Those with EDS are not looking for nor need most of these expensive procedures. But they need the doctor’s time and understanding.
Now, let’s talk about my personal experience with “it’s all in your head” and seeing a psychiatrist for EDS care.
My first wife, Carol, and I were married for 41 years. She passed away in 2008. Carol earned her Master’s degree in Social Work at Miami University in Oxford, Ohio. Back in the 80s, she was the first director of a new 7/24 “Crisis Hotline” that is still in existence in Cleveland, Ohio. She trained over 40 volunteers there, and we did 8-hour shifts. After two years, she started to have symptoms of EDS but did not know what it was. We went to see over 35 doctors with no diagnosis. Her PCP finally decided to check her into a mental hospital for 30 days. Every day she would sit in a chair in front of three psychiatrists who did not understand her physical condition. They would ask her questions and decide what pills she would get that day. Some days they would increase the dosage of a pill she was already taking but never deleted any pills. By the time she left the hospital, she was on 13 pills. None of these helped her. One pill had a “class action lawsuit” because it caused breast cancer. After her experiences at the mental hospital, she was dealing with “clinical depression” for over nine months with another psychiatrist who eventually got her down to five pills. The One pill that had a “class action lawsuit” because it caused breast cancer started to take effect. Carol was diagnosed with breast cancer in 2002. After surgeries and three complete passes with chemo, she barely survived but then passed away in 2008. She was never diagnosed with EDS. If my wife had been diagnosed with EDS instead of being told, “it’s all in your head,” she would have never taken those pills that harmed her.
Now, my daughter Deanna has many issues her mother had with EDS as well. To name a few: hEDS, POTS, MCAS, TMJ, GI issues, etc. Deanna is 50-year-old and has been living with us for five years. She received her pre-med degree at Miami University in Oxford, Ohio and wanted to become a doctor. Her EDS symptoms began shortly after that. Of course, her husband did not understand. After two years of spousal abuse counseling, she finally decided to move in with us and get a divorce. We hired a full-time live-in caregiver to help her throughout the day. She has significant TMJ and has not eaten solid food for three years. Only a liquid diet of four Kate Farms Peptides for 2000 calories a day. She has ankle and knee issues but still wants to walk to the bathroom very slowly 4-5 times a day. I am up until 2 -3 am many nights, getting her ready for bed with braces and bed adjustments. There are many more issues that I could describe.
However, the point I want to make is that neither Carol (after the mental hospital) nor Deanna currently has exhibited major signs of anxiety, depression or other mental illnesses. Deanna has a very well-established “routine” that needs to be followed. She somehow has maintained a “positive” attitude despite her continuous pain and dependence on us. Statements like “it’s all in the head” from those physicians or psychiatrists who wrongfully attribute many typical EDS symptoms or those of comorbid conditions to psychological causes are damaging and dangerous to our community.
Like many of those with EDS, once the “physical condition” is identified and a treatment plan is established, those with EDS can become hopeful and cope well with their symptoms. Some may develop anxiety or depression as a consequence of pain or simply because they have had to endure so many negative experiences.
Due to all the experiences, I just shared with you, I’d like to ask everyone to be cautious when choosing a psychiatrist for EDS care. Like most doctors, the psychiatrist also does not have a clue about “what is EDS” and does not know how to treat it nor has the time or desire to learn. Like the doctor, the psychiatrist will soon become overwhelmed with the “real” mainly “physical” symptoms that the EDS patient is experiencing. The psychiatrist will attempt to treat the physical condition (which they do not understand) as a mental issue (which is dangerous and can cause more problems). Moreover, the psychiatrist’s primary treatment is medication and pills. Many (most) of our EDS members have GI issues and, like my wife Carol and daughter Deanna, have had significant issues with most medications. And there are many more issues that arise from “psychologizing” EDS symptoms. For instance, because of the lack of knowledge related to EDS, many of our parents are being accused of Munchausen syndrome by proxy (MSBP). EDS parents and caregivers are very passionate about helping their family and friends get support and medical treatments. When they are told “it is all in our head,” they do not believe that and continue to persist. Many psychiatrists’ publications support the idea that EDS is a mental rather than a physical issue.
Munchausen Syndrome by Proxy (MSBP).
Psychiatrists Publications like this support the idea EDS is a “Mental” rather than a physical issue”.
“Increasingly, families across America, Britain, Australia, Canada and New Zealand are being destroyed by doctors and other professionals who make false and evenmaliciousallegations against desperate mothers of chronically/critically ill children”. Quote from this article link.
Parents charged with Child abuse
Additionally, we have had multiple reports of parents charged with child abuse because of the lack of knowledge about Ehlers-Danlos and psychiatrist’s publications that promote the inaccurate opinions and findings about EDS. Some cases have resulted in parents’ suicide. Parents have been sent to jail. Other cases have caused the removal of children from original parents who care for them and placed them in foster homes. Foster homes do not have a clue about the child’s physical condition, and the child does not get the help they need, and they get worse.
Those with EDS are primarily now focusing on getting support and treatment for their physical conditions. We want to help them find support groups and educational resources to understand their condition and improve their basic quality of life.
Here is a link from an article by Dr Rodney Grahame challenging these authors assertions
Here is a link to additional justification for staying away from certain Psychiatrists and ignoring inaccurate Psychiatrists’ Publications
We suggest using extreme caution, consulting with or listening to irreputable psychiatrists for Ehlers-Danlos syndrome (EDS) care.
President Chronic Pain Partners 501 c (3) www.edsawareness.com
9 thoughts on “EDS is not all in the head!”
I recently had a doctor tell me I was “Delusional about my heath”.
Not interested in addressing any EDS-related items — he wants to make up issues – pretend I need to be on a statin or diabetes medicine – even though my blood tests are fine.
Thank you John, for sharing what must still be a devastating event in your life in the hope it helps us in some way. My mum too passed away without being diagnosed but spent over 3 months in hospital with “a mystery illness”
I’ve never been told its all in my head, although I’m overweight so I’m told that’s why i have problems. But as I struggle to lose weight after the fist 28lbs I just get disregarded. It was even suggested I’d cheated on a fasting blood test because something was off – I couldn’t believe it.
They may not tell me it’s in my head, but I know they think it, after all I was treated with depression for the first 25 years of my illness and then turned myself into an alcoholic when I started self medicating because that was the only thing stopped my physical pain.
Since covid, Dr’s around the world are worried about patients who are suffering with long covid. (Covid was atrocious I know) but I got so angry when I saw the attention long covid was getting. They’ve had this for 5 mins most of us have suffered EDS symptoms a lifetime.
That, is not in our heads.
Sorry for the whinge but thanks again John x
I am sorry to hear of the extent that Deanna’s symptoms have gotten to… as you have witnessed firsthand our journey is among the most complicated of anyone on this planet.
Fortunately for me when I decided to have a mental health check during the peak of the pandemic the Phycologist was amazed at how well my mental state was given the amount of things I had to deal with on my plate, such as holding down a full time job dealing directly with the public and still dealing with all of the doctors appointments and symptoms EDS throws our way.
I am preparing to have double total knee replacements and even though I have a full litany of specialists who have been treating me for years it is almost impossible to get surgical clearances because although they have been treating me, they still do not fully know me!
And the sad truth is that when we educate one, we have done just that…. Educated ONE.
I hope this upcoming holiday weekend is kind to you both, I am sure you could appreciate a break.
I appreciate all the time and effort you put into sharing your insights with us. My identical twin died before we found out we had HEDS. I also now know that I’m a Hemochromatosis carrier, which has caused a great deal of damage to my organs and I’m sure my twins organs too. My last words to my brother by phone, was to tell him how sad I was for the many years he had suffered terrible pain until given no choice but sign a DNA before being treated in the hospital for all the pain. Please keep fighting for everyone with EDS. Bless you, Cathy
It’s frustrating that the so called health professionals aren’t interested in nor curious about EDS.
I’ve been accused of münchausen syndrome as carer for my grandkids and daughter, malingerer, mental illness, denied pain relief by a pain specialist after major surgery, endless nurses refuse pain medication, it’s endless.
God bless you for standing by your wife and taking care of your daughter. I’m one of those people who finally had to seek mental help, but luckily mine appear to understand my health conditions. I do, however, run in to many family doctors and specialists who will not treat me or dismiss me. You begin to feel helpless/hopeless, which probably added to my need for mental help. But, I am also all alone. I’ve tried marriage twice, both failed (a lot to do with physical problems.) My family doesn’t understand, so I can’t talk to them about it. And my last few dating experiences were abusive. I am on disability because it takes all I have to care for myself and my pets. It’s so frustrating, as I’m sure you’ve seen in your wife and daughter. I wish I could find someone who would understand, let alone help me out from time to time. I’ve pretty much accepted that I will always be alone at this point… 51 years old. But thanks for sharing your story and this information. It’s sad that treatment is so hard to get.
Being cautious with doctors and “therapist “. Does provoke my questioning if I was Being Paranoid. The article was accurate. I was prepared to ask the therapist what she has looked into since I have been telling her my Syndrome affects me differently from the standard person. Thank you for the article. Vetting professionals is critical. And having the knowledge to do so will save me many years of wrong treatment.
Thank you for sharing your story. I have known you and your work for many years, but I had no idea what you went through. I have always said that the two John’s (You and Jon Rodis) have done more for the EDS community than anyone else.
It breaks my heart to see how poorly the medical system treats patients. Diagnosing EDS and its other co-existing conditions and guiding patients down the right path is not that difficult. Its just a question of making an effort.
What bothers me the most is when some psychiatrists and non-psychiatrists make a diagnosis in 2 minutes without examining the patient. Psychiatrists, especially the ones that have nothing better to do, sit around typing up garbage and publish them. They would not know POTS even if it was tattooed on the patient’s forehead. Psychiatry is the only branch of medicine that is not based on any science or objective evidence. I agree that patients do suffer from different psyche conditions such as depression or anxiety, but these are secondary to having pain, lightheadedness, symptoms of mast cell activation syndrome and mostly not being believed by the medical world. Other psyche conditions such schizophrenia, bipolar disorder may exist, but these are not any more common in the EDS world as compared to the non-EDS world. Harm done made by an ignorant psychiatrist about EDS is a double whammy. Not only is it a misdiagnosis, it also closes doors to real treatment. John’s story is a typical one. Bad doctors making bad decisions compounded by psychiatrists who have no clue about organic medical conditions.
Every week I see children with medical PTSD, with gross misdiagnosis made by ignorant and lazy physicians. On top of that, the last thing we need is an ignorant psychiatrist putting his stamp of ignorance on this diagnosis.
The other problem is that children’s hospitals feel that the treatment of all painful conditions is to them through insane amounts of physical therapy without bothering to treat the cause of the pain. In most of these cases, children finally give up and say that they are better just so they can be relieved from the torture. Those who do not, are branded as having conversion disorder. This trend is followed by most Children’s hospitals. There is no good data to support this. The only data there is, is published by these very programs. These programs exist because they make thousands of dollars from insurance companies. Very little attempt is made to diagnose the cause of the pain.
Some Children’s hospitals have employed a breed of incompetent doctors called “Child Abuse doctors’. Their strategy is to blame every child with an undiagnosed medical condition as ‘child abuse’. They are then admitted to a psyche floor where the hospital makes thousands of dollars. If the patient’s insurance denies payment, the child miraculously becomes better suddenly and is discharged home.
These monsters called ‘Child Abuse doctors’ are pediatricians who have been unsuccessful as pediatricians. They don’t know any medicine of value. When specialists try to explain to them, they reject these specialists. Mothers have committed suicide because of this. These Child abuse doctors do not care and will still go after the child and the parent despite that.
The one trick these Child abuse doctors use is that they do not sign any medical records and instruct treating doctors to write notes and treatments. This way, they are immune from lawsuits since they are not the treating doctors. The poor Dr. Bozo who follows their instructions is stuck with a lawsuit.
The reason for my writing this is to educate parents and patients. To be aware of their child’s diagnosis. To avoid hospitals with Child abuse doctors as far as they can. It’s time to speak up and demand better care from physicians. The first step to educating yourself is to check John’s webinars on chronicpainpartners.com or read a book called ‘Disjointed’. Most other websites have generic information on them, not very helpful.
Its not all depressing news. There are some awesome doctors who know and understand EDS. A good start to finding them is to look at the speakers on John’s webinars.
Pradeep Chopra, MD, MHCM
Hi, I’m a mentor of a young man (22) who is diagnosed with HEDS. Unfortunately in the Netherlands it’s the same; we go to hospital when he feels there’s a (sub) luxation that he can’t solve by himself. Sometimes a doctor understands, but most of the time we’re being sent away. When they don’t see it on X-ray, they will do nothing. They even accuse him of medicine addiction and abuse, they dare to say he’s coming for the Fentanyl…. But the young man feels when it’s not right!
This is a very serious problem and I don’t know what to do about it. Thank you for your article. Ot strengthens us. We’ll give it to every doctor and hope for more understanding.