Fundies and Somatic Symptoms

[GeoBQn]

Josh Duggar tweeted about a campaign in support of the parents of Justina Pelltier. Justina's parents claim that she has a mitochondrial disease, while the doctors at Boston Children's Hospital and the Department of Children and Family Services believe she has a somatic symptom disorder. Justina has been kept in a psychiatric award for over a year, with her parents unable to get her out.

http://www.bostonglobe.com/lifestyle/he ... story.html

I have only recently begun reading about the case and I don't know if the Pelltiers are religious, but Joshie's support of the parents made me think of several fundie bloggers with children who are suffering symptoms with no apparent physical source.

Shoved to Them, a Catholic blogger, has a daughter with JRA. In the last week, her daughter has slowly lost the ability to walk without support. They took her to the children's hospital in Dallas, where it sounds like the doctors concluded her problem was psychiatric in nature.

shovedtothem.blogspot.com/2014/04/crowd-sourcing-answer-for-4.html

shovedtothem.blogspot.com/2014/04/okayso-now-what.html

Cheryl's daughter has suffered from increasing fatigue, as well as fainting spells and irregular heartbeat. There are times when she needs a wheelchair to get around. The tests from the doctor come back normal.

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-1.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-2.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-3.html

stopandsmelltheroseshere.blogspot.com/2014/01/where-my-life-is-part-4.html

Do fundies seem to be more at risk for somatic symptoms, or it is a bias because of who is blogging? Has anybody ever had similar symptoms with no bad test results, only for it to turn out to be a real physical problem?

[TrueRebel1]

I am amazed at how many now-grown fundie children (particular young women) have Fibromyalgia or similar chronic illnesses that have no apparent "cause" or "reason". Just in my close family/friends circles alone (which include mostly current and ex-fundies) I'd say half of the women in the 20-30 yr. old age range have some type of "chronic illness". They are sick enough that they have trouble carrying on a normal life, but when they go to the doctor all their tests come back normal. I also know that many of these women who were raised in strict fundie (think ATI) families have physical issues in the sexual realm, such as Vaginismus and similar problems (I'm guessing that stems from emotional issues?).

I read Cheryl's daughter's posts. Personally, I think it sounds like she's having anxiety and panic attacks. Which wouldn't surprise me either -- often fundie children are under so much mental and emotional stress that it would only make sense to have panic attacks....

[GeoBQn]

During a stressful senior year in high school, I had anxiety attacks that manifested as a sudden onset of fatigue. At school, I would have to walk along the walls to hold myself up. I also felt flush in my face. It was a feeling I usually associated with a cold or flu coming on, but the next day I would wake up fine. I have gotten it sometimes since, but it stopped happening regularly once I went to college.

Shoved to Them was especially angry at the idea that this is "all in her head," and acted as if the doctors think her daughter is making this up. They don't seem to understand that that a somatic symptom disorder, like a conversion disorder (patient has no control over symptoms), is not the same as Munchausen's (patient causes symptoms on purpose).

[Three and Done]

Josh Duggar tweeted about a campaign in support of the parents of Justina Pelltier. Justina's parents claim that she has a mitochondrial disease, while the doctors at Boston Children's Hospital and the Department of Children and Family Services believe she has a somatic symptom disorder. Justina has been kept in a psychiatric award for over a year, with her parents unable to get her out.

http://www.bostonglobe.com/lifestyle/he ... story.html

I have only recently begun reading about the case and I don't know if the Pelltiers are religious, but Joshie's support of the parents made me think of several fundie bloggers with children who are suffering symptoms with no apparent physical source.

Shoved to Them, a Catholic blogger, has a daughter with JRA. In the last week, her daughter has slowly lost the ability to walk without support. They took her to the children's hospital in Dallas, where it sounds like the doctors concluded her problem was psychiatric in nature.

shovedtothem.blogspot.com/2014/04/crowd-sourcing-answer-for-4.html

shovedtothem.blogspot.com/2014/04/okayso-now-what.html

Cheryl's daughter has suffered from increasing fatigue, as well as fainting spells and irregular heartbeat. There are times when she needs a wheelchair to get around. The tests from the doctor come back normal.

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-1.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-2.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-3.html

stopandsmelltheroseshere.blogspot.com/2014/01/where-my-life-is-part-4.html

Do fundies seem to be more at risk for somatic symptoms, or it is a bias because of who is blogging? Has anybody ever had similar symptoms with no bad test results, only for it to turn out to be a real physical problem?

It took the doctors literally YEARS to somewhat determine what my physical problem(s) are. I actually had an "esteemed" professor of neurology tell me I "needed a psychiatrist instead of a medical doctor"! This was done in front of a roomful of medical students! (He was an arrogant asshole.) I literally ran from the building in tears.

Without getting too specific, I was eventually diagnosed with a disease of the nervous system, then some serious spinal problems a few years later.

Doctors DON'T know everything, and they often have personal biases that preclude further investigation when the "usual" tests don't show results. It has been my personal experience that simply being female has lead more than one doctor to discount my symptoms.

[nomoxian]

It has been my personal experience that simply being female has lead more than one doctor to discount my symptoms.

Yup :( Or for them to recommend "exercise" as if I haven't already been doing that for over a decade, or "diet" as if food is so easy and cheap to get (comparatively, it is now, but not at the time when I was getting this advice)

[mockingbird]

I've been following Justina Pelltier's case for awhile. I haven't read anything about them being fundy but the Josh Duggar connection does raise my suspicions a little bit. I don't think we are getting the full story from either side, especially since the hospital can't comment publicly due to privacy laws.

This is all "allegedly": Justina had a doctor at Tufts who is an expert on mitochondrial disease. She was having problems and he recommended her parents take her to Boston Children's to be admitted and then she ended up in the psych ward. The parents say they only allowed to see her a few times a week and until the court ordered them to include the Tufts doctor, the hospital was refusing to work with him or allow him any access to her files. (When the story first broke there was a "contract" going around that the BC staff supposedly asked the parents to sign and it included things like not being allowed to get a second opinion on the case.) The parents are also claiming that she has gotten worse since being admitted to BC, supposedly because they were not providing her adequate care for her mitochondrial disease. However, I know people on here have commented on mitochondrial disease and how it can drastically change from day-to-day (one day the child is relatively fine and the next they are very sick) so it sounds like that alone could explain her decline, even with adequate medical care. There have been reports of other parents having similar problems with BC. If I can find any of those I will post them.

On one hand, I don't want to blame the parents. Let me preface this by saying I am not anti-doctor or anti-modern medicine at all, and have had mostly wonderful experiences - but when you are involved with medicine (or any establishment) your whole life you are going to run into bad eggs occasionally. I was born with a serious illness and unfortunately, my mom has been accused of being "crazy" and having Munchausen's by proxy (my dad got less of it, I think because he is a doctor so his opinion has more weight). I don't think that's really too uncommon among parents of sick or special needs kids. My illness was very legitimate and life-threatening - but rare and was not diagnosed for months (short compared to some). I was able to be successfully treated but still have some chronic problems. It is still very easy for doctors to overlook special considerations in my case and recommend things that would cause me harm, and I have to be very vocal about speaking up for my needs (something very simple: I am short and don't weigh anything near the average adult, and need to have most prescription dosages adjusted down for my weight, but most adult doctors are not used to doing this). I'm just going to be brutally honest, some medical professionals do not take well to a patient trying to direct their own care, or a patient knowing more about what they need than a random new doctor or nurse does. HOWEVER, it's very hard for me to believe that a hospital as reputable as BC would totally block out Justina's other doctor, ignore her existing diagnoses, refuse to meet her physical needs (the parents were claiming she had electrolyte imbalances at one point, I think), make the parents sign that they were not allowed to seek a second opinion (kind-of thinking that would be illegal or not hold up as a real contract even if they did really try it?), etc. - basically "kidnap" a child as the parents claim. (Whenever I have had problems it's been with one doctor or nurse, not the whole hospital.) Especially since the courts keep siding with the hospital, I feel like there HAS to be more going on than what the parents have put out there. I have no idea what to think of this case, really.

In general things like mitochondrial disease, endocrine problems, and autoimmune diseases can all have really vague symptoms and I know with things like lupus, people don't always test positive on the lab tests but can still have it. Probably partly because it's a newer diagnosis but I know someone who was only diagnosed with mitochondrial disease in her 20s although she had symptoms her entire life. However, somatic symptoms/diseases are just as real and it wouldn't surprise me if they were more common among fundies since they are under such stringent rules - has to be very stressful. Isn't there speculation or anecdotes about eating disorders also being common among fundy women? I think it's important to rule out other causes first and not just assume everything is somatic, but it definitely wouldn't surprise me, either.

[dianapavelovna]

I imagine Josh supports the campaign because of fundies' obsession with "parents' rights" - to homeschool with zero oversight, to spank the living daylights out of their kids, to never have to answer to anyone for their actions, especially CPS.

It is an interesting case though. I'm sure there's plenty we don't know, since the state can't state their case publicly.

[Marianne]

Cheryl's daughter has suffered from increasing fatigue, as well as fainting spells and irregular heartbeat. There are times when she needs a wheelchair to get around. The tests from the doctor come back normal.

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-1.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-2.html

stopandsmelltheroseshere.blogspot.com/2013/12/where-my-life-is-part-3.html

stopandsmelltheroseshere.blogspot.com/2014/01/where-my-life-is-part-4.html

Do fundies seem to be more at risk for somatic symptoms, or it is a bias because of who is blogging? Has anybody ever had similar symptoms with no bad test results, only for it to turn out to be a real physical problem?

This make me think of Ehlers Danlos Syndrom. Doctors don't know it and diagnostic is difficult. I had the same history. Fatigue, pain, wheelchair, three doctors before having a diagnostic. I feel for her.

[Cran]

There have been several cases where young patients where admitted to psych wards and then the parents were excluded and threatened with loss of custody if they do not comply with the medical team, even if they wanted to transfer medical care to another hospital, so I will not discount this story per se. The parents might go crazy at the thought her child is being declared mentally ill, or they might genuinely be at the receiving end of medical mistreatment, you just can't tell.

That said, I think any lifestyle that aims to suppress natural emotions and behaviours carries a higher risk of psychological disorders and likewise somatisation, it wouldn't surprise me if young fundie woman, who usually suffer more under familiar oppression, were high risk.

[BravaAmica]

There are many strange things about this case. In no particular order:

- The doctor they were referred to at BCH was never involved in their care. Like not even for a consult. (If your doctor refers you, his office will call ahead and tell them you're coming and why. This is an insurance requirement for referrals. In fact, you likely have to sign a form giving them permission to do so. So, BCH likely knew this family was coming.)

- The patient was addmitted and then removed from her parents' care almost immediately.

- The doctor from Tuft's referred his patient to BCH, a hospital known for having a policy that protects children from abusive parents.

- The doctor from Tuft's never gave this patient a muscle biopsy, the definitive test of mitochondrial disease.

My theory: This doctor at Tuft's suspected his patient was being abused so he referred her to a hospital that has the resources to investigate the matter and also to keep his patient from harm.

Just my theory. I could be wrong, but the whole thing screams "set up" to me.

[keen23]

It's all so sad. I grew up in the suburbs of Boston, and have many relatives working in medicine. My brother and sister both did nursing rotations at BC. I have a friend with a sick child (a male child, mind you). His medical problems have stumped the local medical experts- she lives in very northern NH- and they want her to take her child to BC for further testing. She's refusing, because she doesn't want him to be "kidnapped." She is genuinely afraid of BC because of the hype surrounding this case.

[ari_belle]

It took the doctors literally YEARS to somewhat determine what my physical problem(s) are. I actually had an "esteemed" professor of neurology tell me I "needed a psychiatrist instead of a medical doctor"! This was done in front of a roomful of medical students! (He was an arrogant asshole.) I literally ran from the building in tears.

Without getting too specific, I was eventually diagnosed with a disease of the nervous system, then some serious spinal problems a few years later.

Doctors DON'T know everything, and they often have personal biases that preclude further investigation when the "usual" tests don't show results. It has been my personal experience that simply being female has lead more than one doctor to discount my symptoms.

omg are you me? This thread was making me so angry, with someone accusing these fundie women of having a psychiatric problem instead of realizing that doctors aren't always right. I have a chronic illness resulting from nerve damage that took fucking YEARS to get sorted out. I'm now having my THIRD SURGERY. If I hadn't seen about ten different doctors/neurologists/surgeons, everyone would still think I'm crazy. Please educate yourselves before accusing people of somatic symptoms. Chronic illness is real, and my life is ruined because of it. I am 23 years old and I became ill when I was 16.

[BravaAmica]

omg are you me? This thread was making me so angry, everyone accusing these fundie women of having a psychiatric problem instead of realizing that doctors aren't always right. I have a chronic illness resulting from nerve damage that took fucking YEARS to get sorted out. I'm now having my THIRD SURGERY. If I hadn't seen about ten different doctors/neurologists/surgeons, everyone would still think I'm crazy. Please educate yourselves before accusing people of somatic symptoms. Chronic illness is real, and my life is ruined because of it. I am 23 years old and I became ill when I was 16.

I'm glad both of you persisted and got medical treatment which improved your quality of life. Doctors don't know everything and we have to be our best advocates to enure health care.

For what it's worth, I didn't think the OP was saying every person with a hard to diagnose illness has a psych problem. I read the OP as having the perspective that she wondered if the repressive culture of fundamentalism led to an increase in somatic symptoms in women.

[GeoBQn]

I'm glad both of you persisted and got medical treatment which improved your quality of life. Doctors don't know everything and we have to be our best advocates to enure health care.

For what it's worth, I didn't think the OP was saying every person with a hard to diagnose illness has a psych problem. I read the OP as having the perspective that she wondered if the repressive culture of fundamentalism led to an increase in somatic symptoms in women.

Yes, that's what I meant. I didn't word it in the best way. I didn't mean to imply that all chronic conditions are psychiatric in nature or that all doctors know best and are free from bias. I've just been seeing these mysterious illnesses come up on several fundie blogs lately and it made me wonder if there was something cultural behind it.

[TrueRebel1]

omg are you me? This thread was making me so angry, with someone accusing these fundie women of having a psychiatric problem instead of realizing that doctors aren't always right. I have a chronic illness resulting from nerve damage that took fucking YEARS to get sorted out. I'm now having my THIRD SURGERY. If I hadn't seen about ten different doctors/neurologists/surgeons, everyone would still think I'm crazy. Please educate yourselves before accusing people of somatic symptoms. Chronic illness is real, and my life is ruined because of it. I am 23 years old and I became ill when I was 16.

I hope you aren't referring to my post. I didn't mean to imply that fundie women are making up chronic illnesses. Rather, I was pointing out the intriguing fact that (in my experience) a large percentage of women (and men) raised fundie have chronic illnesses -- sometimes vague, un-diagnosed illnesses, sometimes fibro, etc. My point is, that I believe something in their upbringing has given them a greater chance of having a chronic illness. So yes, their illness IS very real and physical and certainly not made up....but I think some of these conditions are triggered by certain emotional and mental states.

[Mama Mia]

omg are you me? This thread was making me so angry, with someone accusing these fundie women of having a psychiatric problem instead of realizing that doctors aren't always right. I have a chronic illness resulting from nerve damage that took fucking YEARS to get sorted out. I'm now having my THIRD SURGERY. If I hadn't seen about ten different doctors/neurologists/surgeons, everyone would still think I'm crazy. Please educate yourselves before accusing people of somatic symptoms. Chronic illness is real, and my life is ruined because of it. I am 23 years old and I became ill when I was 16.

:clap: :clap: :clap: :clap: :clap: :clap: :clap: :worship: :worship:

Seriously. I don't understand how physicians throwing everything they don't understand into the bucket of "stress" or conversion disorder is any different than old ideas of autism being caused by cold mothers or homosexuality being due to overbearing mothers or the dozens of other women hating ideas that have been taken as "fact" over the course of history.

[urban explorer]

I think it was a couple weeks ago these parents were on Dr. Phil. He does do his research before hand, he had reservations in the beginning but has sided with the parents. I know one of there other daughters has the same illness, and is doing fine. Don't know why the same can't be true for Justina.

[Aurora rising]

The same here, I have a "Chronic Fatigue Syndrome", maybe from mononucleosis (I had the infection at least 3 times). Fortunately, I have a wonderful doctor who gave me the diagnosis relatively fast. the problem is that my illness cannot be seen in a normal blood work and no cure is known. So a lot of doctors take the "psychosomatic route" and gave me the advice to look for a good therapy. Well, I had a wonderful psycho-therapist but this doesn´t help me symptoms. Because the are not psychosomatic. But tell a doctor that you are a woman who wants kids, had only a miscarriage and that my mother died 2 years ago and you know the answer before.

I live in Germany and psychosomatic is very "in" at the moment. Everything comes from psychosomatic, flu, allergies, cancer... :angry-banghead:

[amydamy]

It took the doctors literally YEARS to somewhat determine what my physical problem(s) are. I actually had an "esteemed" professor of neurology tell me I "needed a psychiatrist instead of a medical doctor"! This was done in front of a roomful of medical students! (He was an arrogant asshole.) I literally ran from the building in tears.

Without getting too specific, I was eventually diagnosed with a disease of the nervous system, then some serious spinal problems a few years later.

Doctors DON'T know everything, and they often have personal biases that preclude further investigation when the "usual" tests don't show results. It has been my personal experience that simply being female has lead more than one doctor to discount my symptoms.

I was sick for three years in high school with lots of random symptoms and I did have some real issues with my sinuses which didn't help. I had lots of and lots of tests and all they ever found was a cyst in one of my sinuses and some bacteria in my blood that is usually only found on your skin. My junior year in HS I started seeing a therapist taking an SSRI and spending as much time away from my parents as possible and I finally started to feel better. The doctors, we went to an office where you saw someone new each time, I was seeing at the time never even hinted it was in my head. When I started seeing a new doctor my first year in college and gave him my super detailed history he suggested it had been either somatic or a physical manifestation of my anxiety. Sometimes stuff can just be in your head not that I am saying your illness is. I had tests that went well above and beyond the standard blood draw and xrays.

[singsingsing]

Psychosomatic symptoms are very real and very distressing and can cause just as much trouble to a person as symptoms arising from a physical ailment. If everything else has been ruled out, a person should not be told that their symptoms are 'just' psychosomatic, because psychosomatic symptoms are indicative of underlying psychological problems which need to be addressed.

The type of repression we see in fundamentalist environments often leads to the development of serious psychological problems - however, a fundie is not 'allowed' to be depressed or anxious, because these disorders either do not exist or are signs of Satanic attack or lack of faith. Therefore their symptoms manifest physically because physical symptoms are more 'legitimate'. This happens all the time to non-fundies as well. An array of strange, frightening, and sometimes debilitating symptoms arise in a person and the idea that they could have a psychological origin is the last thing on their mind.

[usmcmom]

You know, when I think of these women (mostly women, I guess) in this regard, I do feel bad for them. It seems like so many of them must be constantly on edge - fearful of disappointing their husband or father. They are isolated and not allowed to pursue any sort of hobby or social outlet. I think they probably do have very real physical symptoms that are caused by emotional issues. For instance, depression can bring on many physical ailments; it did for me. They first have to convince the men in their lives to let them see a doctor; then they have to find a doctor that will take them seriously. This all makes me think of Cabinet Man and how his wife must suffer. Also, how much happier would Teri Maxwell be if she sought medical treatment?

[samismad]

In my immediate social circle of 4 women and 3 men, all 4 of the females have been accused of somatic diseases for chronic illnesses. Females are at a higher risk of chronic illnesses such as chronic fatigue, MS, disautonomia, etc, regardless of family background. None of my friends are religious (I am though), and none were brought up religious, with the possible exception of one of the guys. All of us have been through some serious shit to get our completely physical diagnosises.

[usmcmom]

Psychosomatic symptoms are very real and very distressing and can cause just as much trouble to a person as symptoms arising from a physical ailment. If everything else has been ruled out, a person should not be told that their symptoms are 'just' psychosomatic, because psychosomatic symptoms are indicative of underlying psychological problems which need to be addressed.

The type of repression we see in fundamentalist environments often leads to the development of serious psychological problems - however, a fundie is not 'allowed' to be depressed or anxious, because these disorders either do not exist or are signs of Satanic attack or lack of faith. Therefore their symptoms manifest physically because physical symptoms are more 'legitimate'. This happens all the time to non-fundies as well. An array of strange, frightening, and sometimes debilitating symptoms arise in a person and the idea that they could have a psychological origin is the last thing on their mind.

Singsingsing, I think we had the same thought at the same time. You presented it much more clearly. Thank you.

[Gingi1976]

It's been fairly well documented that the parents aren't the easiest to deal with. They've been verbally abusive and belligerent to the hospital workers and DCFS which doesn't help matters. Remember, they're trying to demonstrate to everyone involved that they are not abusive (medically or otherwise). Kind of hard to do when you're screaming and calling someone a Nazi.

There are two sides to every story and the truth is somewhere in the middle. The parents have turned to the media to plead their case, but we're only hearing one side of the story as the hospital/state is legally prevented from speaking. I don't know who is right or wrong. But I do think there is A LOT more to this story than is being reported.

http://abcnews.go.com/Health/parents-si ... gle.com%2F

[ThatSnark]

I've wondered the same thing about some of the fundie bloggers, particularly the mothers and older daughters in these families. In the culture, it seems that illness is one of the only acceptable ways to drop out for a while, from what seems to be a very stressful, demanding, exacting way of life. Symptoms of high stress with headaches, digestive problems, sleep issues, etc. are all legitimate complaints. I am sure that many or even most of them truly suffer from their symptoms, so it doesn't cross my mind to think of malingering, but from the outside it looks like the lifestyle could definitely cause stress-induced illness.