EDS is not all in the head!

It is not all in my head!
It is not all in my 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.

John Ferman

President Chronic Pain Partners 501 c (3) www.edsawareness.com

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