Help Me Convince My Sister Not to Take My Niece to a Psychiatrist!

[Mya Symons]

I'm going to try to keep this short as possible because I have to get to bed. Here's what's happening:

My niece has been experiencing fatigue and pain for months. The doctors can't find anything wrong with her so their suggestion to my sister is to take her to a psychiatrist because it is a psychological problem.

My sister lives in an area in Maryland (Rockville) where lyme disease rates are very high. Her son, my nephew, had diagnosed lyme disease. The doctor caught it right away, he tested positive on the antibody test, and the doctor gave him antibiotics right away. He hasn't had any other problems. The doctor did not test anyone else in the family for lyme disease at that time even though he should have. This was over a year ago. Now my niece is having the same type of symptoms as her brother. However, she tested negative on the standard Lyme antibody test.

My sister lives less than a mile away from Clogen Laboratories (http://www.clongen.com/). I did try to convince her to go there and get some PCR and DNA testing for lyme disease to be absolutely sure my niece does not have Lyme diease. I tried to explain to her that sometimes the antibody test gives false negatives.

Further, I explained to her that Fibromyalgia can be hereditary (if one family member has it, there is more of a chance of another family member having it). I asked her to take my niece to a doctor who is experienced with Fibromyalgia and CFS diagnosis. She's not trying to hear me! She wants to do what her doctor says without getting a second opinion.

I'm afraid that if my niece does not get more support from her family and treatment for the pain, she will become suicidal. I would not be surprised if they tried graded exercise therapy on her.

Please. I'm desperate. If you have any ideas on any articles or information I could give to my sister that could persuade her to change her mind, will you please let me know!! If anybody wants to share their own story about being forced to see a psychiatrist or mental health professional or their story on GET or cognitive behavioral therapy and how that affected you, please do. If it's okay, I will forward it to my sister. Please reply here and then let me know if I can share it.

My sister is a highly intelligent woman and a high powered attorney. I can't understand how they could convince her that my niece is mentally ill just because she is in pain and her doctors aren't willing to try harder to figure out what is going on. This is so frustrating!

I spent about 10 minutes on the phone yelling at my sister about this about 2 months ago because I was so upset by it and couldn't convince her not to do this. She finally called me again the other day and we had a pleasant conversation, although we both stayed away from the subject of therapy.

Now is a good time to once again try to talk to her calmly and reason with her. I just need to prepare something before hand.

[Edited because I wrote Main instead of Maryland. They both start with an M . Darn it. It's Rockville Maryland, not Rock Springs]

 

[Effi]

@Mya Symons It's hard to convince people who don't want to listen. But I do think it's possible. And your niece is lucky to have a caring aunt like you!!

The first thing that comes to mind is an editorial in Annals of Internal Medicine, titled: 'ME/CFS: a real illness'. (not about fibro though, don't have a lot of inside info about that) I gave this article to a psychiatrist (who is well aware of what CFS etc are, so didn't need convincing, but still) and he has been handing it out to others because he says it's very good. It's a good power of authority argument, if you catch my drift.

However, these recent reports, summarizing information from more than 9000 articles, should put the question of whether ME/CFS is a "real" illness to rest. When skeptical physicians, many of whom are unaware of this literature, tell patients with ME/CFS that "there is nothing wrong," they not only commit a diagnostic error: They also compound the patients' suffering.

http://annals.org/article.aspx?articleid=2322808

 

[Mya Symons]

@Mya Symons It's hard to convince people who don't want to listen. But I do think it's possible. And your niece is lucky to have a caring aunt like you!!

The first thing that comes to mind is an editorial in Annals of Internal Medicine, titled: 'ME/CFS: a real illness'. (not about fibro though, don't have a lot of inside info about that) I gave this article to a psychiatrist (who is well aware of what CFS etc are, so didn't need convincing, but still) and he has been handing it out to others because he says it's very good. It's a good power of authority argument, if you catch my drift.

http://annals.org/article.aspx?articleid=2322808

Thank you for the article, Effi.

 

[sarah darwins]

That's an excellent article, particularly, I would think, for persuading a "high power attorney".

The author, Anthony L Komaroff, "serves as the Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women's Hospital in Boston."

He has a long association with Harvard. Not someone easily dismissed. Nice suggestion.

Good luck, Mya.

 

[Asa]

Maybe you could give your sister the names and numbers of *good* psychiatrists/psychologists (i.e. those familiar with ILADS or CCC/ICC ME, etc. for example) for a second opinion, at least. How is that not reasonable?

Maybe recommend the following blogs and/or specific material from these blogs?

(1)

Lorraine Johnson, JD, MBA is the Chief Executive Officer of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic...

She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council.

In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews.

She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease.

https://www.lymedisease.org/news-blogs/lyme-policy-wonk/


(2)

I am a lawyer admitted to practice in Germany and in California. My career got cut short by ME....

(Note: Blog author's spouse and fellow advocate is also a lawyer.)
http://thoughtsaboutme.com/


(3) Another former attorney:

I am Jennie Spotila, and I fell ill with Chronic Fatigue Syndrome on October 6, 1994. I am disabled, and mostly housebound, but I have been active in writing about CFS and advocating for more research funding since the late 1990s. I served on the Board of Directors of The CFIDS Association of America from 2006 to 2011, and served as Chairman in 2008 and 2009. I have testified before the CFS Advisory Committee on multiple occasions, and I have given many media interviews about the illness. Occupy CFS is a blog about living with CFS, including the politics, research, medicine, and personal experiences.

http://www.occupycfs.com/


(4)

Ted Chabasinski (born March 20, 1937) is an American psychiatric survivor, human rights activist, and attorney... In January 2007 Chabasinski acted as the attorney for the late psychiatric survivor activist and author Judi Chamberlin, the medical journalist and author of Mad in America and Anatomy of an Epidemic, Robert Whitaker, and the director of MindFreedom International David Oaks in opposing a motion by Eli Lilly to extend an injunction to conceal documents that revealed that the company had known for the previous decade of the potentially lethal effects of Zyprexa and had engaged in an illegal off-label marketing Campaign...

https://en.wikipedia.org/wiki/Ted_Chabasinski

http://www.madinamerica.com/


(5) See also criticisms made by psychiatrist Allen Frances?


(6) And of course articles by David Tuller


[EDIT:]


(7) Danish lawyer Jacob Skjoldan -- Regarding Karina Hansen's case. (Note: Hansen was abducted within weeks of Justina Pelletier. While Pelletier has since been freed, Hansen is still being held.) http://web.archive.org/web/20151025.../show/42622428-skjoldans-letter-to-71-comitee

 

[xrunner]

Perhaps I'd show her TV and paper interviews where John Caudwell talks about the health problems of his family esp. the mental problems of his son, who after years of seeing psychiatrists was eventually diagnosed with Lyme. Here's one

 

[ahmo]

@JaimeS has written two excellent documents defining, describing ME. A longer version, and a short version. So sorry this is happening.

 

[Esther12]

While it's good to try to provide useful information, I think that you also need to remember that this is a matter that they will decide upon for themselves, and try not to get too caught up in fighting to control what happens.

Also, I think that there are a lot of people making exaggerated claims about the prevalence of Lyme, and it's role in causing CFS, so it's worth being cautious in any claims that you make here. Good luck, and best wishes to your niece.

 

[Snowdrop]

Maybe shoot for a smaller goal. Don't suggest she not take your niece to a psych suggest that she wait a bit.
Don't do anything right away. And maybe do a little research to make an informed and thoughtful decision.

 

[Snowdrop]

http://www.psychiatryadvisor.com/op...-in-chronic-fatigue-treatment/article/405424/

This link is to a psychiatrist who treats fatigue and pain with antivirals. He is not some hole in the wall psych but well respected.

 

[CFS_for_19_years]

Your niece could always get lucky and find a psychiatrist who actually understands CFS/ME/FM and will return her back with a note to primary care that reads "She has a physical illness, not a psychiatric one." Such psychiatrists do exist, I even found a few within my HMO, but without knowing much about the psychiatrist beforehand, there's no way to tell what they will say.

 

[ScottTriGuy]

It is natural tendency to resist 'convincing'...I say 'black' you say _______. I say 'up' you say _______. Often our immediate response to 'advice' is to resist and do the opposite.

The more you argue for change ('don't go to the psych'), the more she's forced to argue for the status quo ('going to the psych'). So instead of taking an opposing position, take a collaborative position.

Sometimes a more helpful approach is validate current efforts and values and reflect/strengthen their motivations (as opposed to telling them what to do).

With that in mind:

Reflect her previous efforts to get her child support. And the frustration that those routine tests are not providing any clues.
Affirm and validate her intent and efforts to have her child well again.
Ask permission if you can share what other patients have found helpful (non-routine biomedical) and not helpful (traumatizing psychobabble). (If she says 'no', you have to respect that - she's not ready or open at that moment - if you keep pushing, you'll be pushing her farther away).
After sharing the information (and not your advice), give her space and time to process.

The more your agenda seems to be about avoiding psych, the less she can trust you as a collaborator toward health. Your challenge, and its a tough one, is to resist giving advice or your opinion. However it is valid to speak of your own experiences, when they are sought, using "I" statements, ("What worked for me, was...).

Of course, just my 2 cents. Good luck.

 

[Mya Symons]

Maybe you could give your sister the names and numbers of *good* psychiatrists/psychologists (i.e. those familiar with ILADS or CCC/ICC ME, etc. for example) for a second opinion, at least. How is that not reasonable?

Maybe recommend the following blogs and/or specific material from these blogs?

(1)
https://www.lymedisease.org/news-blogs/lyme-policy-wonk/


(2) (Note: Blog author's spouse and fellow advocate is also a lawyer.)
http://thoughtsaboutme.com/


(3) Another former attorney:
http://www.occupycfs.com/


(4)
https://en.wikipedia.org/wiki/Ted_Chabasinski

http://www.madinamerica.com/


(5) See also criticisms made by psychiatrist Allen Frances?


(6) And of course articles by David Tuller


[EDIT:]


(7) Danish lawyer Jacob Skjoldan -- Regarding Karina Hansen's case. (Note: Hansen was abducted within weeks of Justina Pelletier. While Pelletier has since been freed, Hansen is still being held.) http://web.archive.org/web/20151025.../show/42622428-skjoldans-letter-to-71-comitee

Thank you. I think this will help.

 

[Mya Symons]

There is something I left out of the story. My niece has had pica since she was a little girl. Thus, she already has psychiatric history. I think this is why her doctor was so quick to say her issues are psychological. She is already seeing a psychiatrist and I assume this psychiatrist is agreeing that her pain and fatigue issues are psychological.

So many people with ME and FMS have ended their lives. Some because they have not had enough support. I'm worried about my niece getting depressed and doing this, but I'm also worried that I will somehow make it worse. I think if my sister is not listening or believing me, what must she think of me?

What I want is for my sister to take my niece to a doctor who is familiar with ME, fibromyalgia and Lyme disease and get a second opinion. I guess the best thing to do is to think very carefully about what I'm going to say to her and what evidence I'm going to present to her.

Thank you for all your help and suggestions. I really appreciate it.

 

[barbc56]

I'm not a doctor but isn't pica caused by a nutritional deficiency? When I was quite anemic from menstrual blood loss right before getting a hysterectomy, I would chew ice cubes, sometimes hard candies to the point that I chipped two teeth. This stopped once the anemia was corrected.

Sometimes OCD can be confused with PICA. It can also work the other way around.

Any psychiatrist whose worth their salt should recommend a complete physical. That's how my low thyroid was discovered.

Something else came to mind but obviously I don't know the inner workings of your relationship with your sister, so it's speculation on my part. Could something psychiatric also be occuring with the physical symptoms that you're sister hasn't mentioned because of the stigma of mental illness?

Simply being there and asking your sister what she needs from you can be a hugh source of support and may make her a bit more receptive to a bit of gentle nudging. It's human nature to become defensive and dig in our heels when someone keeps insisting we are wrong, whether accurate or not. Plus these type of situations are often much more complicated than what seems apparent on the surface and there may simply be no easy answers.

Letting go of issues you have no control over can be so very frustrating especially when it comes to those we love. Been there, done that, especially raising two teenage daughters and I have the gray hairs to prove it. It's also much easier said than done and the line isn't always clear when to step in.

If the situation was turned around and your sister was trying to talk you out of what you believe, how would you react?

Of course if there is physical danger involved other strategies may be needed.You seem worried your niece will develop depression and that's a real concern. But if depression is going on or suspected a psychiatrist or possibly a therapist might be a good option.

It's also important that all your niece's doctors work as a team. Is there some type of clinic available where doctors with different expertise but am not sure what type of clinic would be a match.

You may have already thought of all the above. I also hope I'm reading your post correctly.

You obviously care very deeply about your niece and sister. She is lucky to have you. Sometimes support simply means being there if she wants to vent.

Good luck and best wishes for your sister and niece. Keep us updated.

Take care.

Barb

I didn't realize I wrote so much. I'm brainstorming and sometimes when I do that I can become long winded. So please keep that in mind. Like I said, there may be no easy answers and what works in one situation may not in another. Good luck.

 

[Asa]

"The scant research that has been done on the causes of pica suggests that the disorder is a specific appetite caused by mineral deficiency in many cases, such as iron deficiency [nih.gov and autismspeaks.org list iron and zinc* / nih.gov names lead poisening too], which sometimes is a result of celiac disease[3] or hookworm infection..."
https://en.wikipedia.org/wiki/Pica_(disorder)

(This PR thread discusses zinc. http://forums.phoenixrising.me/index.php?threads/cfs-and-zinc-deficiency.476/ Seems like zinc (and other) deficiency is associated with Lyme too?)

"Patients with pica and other eating disorders may also be hospitalized for other conditions such as depression, fluid and electrolyte disorders, schizophrenia, or alcohol-related disorders."
https://www.psychologytoday.com/blog/brain-sense/201109/little-known-eating-disorder-is-the-rise

Nih.gov also recommends testing patients with PICA for infection: https://www.nlm.nih.gov/medlineplus/ency/article/001538.htm



"The word pica comes from the Latin word for magpie, a bird known for its large and indiscriminate appetite.
Pica is most common in people with developmental disabilities, including autism and mental retardation, and in children between the ages of 2 and 3. Pica also may surface in children who've had a brain injury affecting their development. It can also be a problem for some pregnant women [hormone related??], as well as people with epilepsy."
http://kidshealth.org/parent/emotions/behavior/pica.html

I've also heard that *some* people within the autism community attribute some level of improvement (or symptom reduction?) to a gluten-free dairy-free diet.

Maybe people with (behavior described as) PICA are more succeptible to nutritional and neurological issues? If so, then it seems all the more logical to be evaluated by someone(s) with biological expertise in these areas.



Consider also perhaps that the head of the US National Institute of Mental Health recommended (in 2013) a new course of action, saying that mental disorders are biological disorders.
http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml


Sorry you're experiencing this, Mya.

 

[Effi]

she already has psychiatric history. I think this is why her doctor was so quick to say her issues are psychological. She is already seeing a psychiatrist and I assume this psychiatrist is agreeing that her pain and fatigue issues are psychological.

hi @Mya Symons . I hear a lot of stories of ME patients with a (separate) history of psychiatric issues whose ME is continuously dismissed by doctors, just because of the psychiatric background. Even if they don't have symptoms of the psychiatric condition at the moment. I think this happens because doctors don't like to admit they don't have all the answers. Blaming everything on a psychiatric incident in the past is not accurate and just plain lazy doctoring imo. Of course if there is a chance of your niece getting depressed and/or suicidal, the support of a psychiatrist would be appropriate. But the ME shouldn't be ignored, as this isn't going to make it any better. Finding an ME-literate psychiatrist would be perfect. They do exist here and there.

I hope you find a solution that everybody feels comfortable with. Hang in there.

 

[dfwmom]

Actually, technically, the psychiatrist is one of the few medical doctors who can treat it with medication, and there is definitely an aspect of brain chemistry to the equation. However, avoid psychologists like the plague. You can't talk a child out of having M.E. CBT can help, but about as much as a bandaid on a sliced artery. Other doctors who can help would include neurologist and rheumatologist. However, doctors are generally incompetent with this disease, and the smart ones, who know they are out of their depth, tend to refer you back and forth between them, until you arrive at a dumb one who thinks he knows everything, at which point you are likely to be in real trouble if you follow his advice. I've had more luck, with my daughter, who has CRPS, CFS and Fibro, addressing it through supplements and LDN, and genetic screening which I did myself through 23andme, after trying doctors for about five years. The doctors made her worse, not better. The medications were literally poison, and the doctors were very creepy with their comments about "taking the parents out of the equation" and putting her in a full-time day program (yep -- CBT and GET). Basically, the theory is that if we crack the whip hard enough, we can get some work out of this pony (but what you'll really do, if you fall for it, is induce a major flare and make the kid completely bedbound).

You might want to acquaint your sister, the lawyer, with the experience of Justina Pelletier in Boston, and Karina Hansen, in Denmark, and Sophia Mirza in the U.K., and warn her to avoid major Children's Hospitals until her child is of age. Parents with kids who have complex illnesses, who are inclined to argue, as I suspect your sister is, are at risk of medical kidnap, of having doctors pull rank on them and take custody of their child. I now avoid major children's hospitals and psychologists like the plague.

What has worked for us has been supplements and, lately, LDN, which you can do yourself.

Risk of Medical Kidnap
- http://medicalkidnap.com/2015/11/04...kidnap-paramedic-and-film-producers-daughter/

Lyrica Side Effects
Warning - Lyrica can cause severe depression and x-rated slasher/murder dreams. Not Kidding. We lived it.
- http://www.drugs.com/forum/general/negative-reaction-lyrica-49958.html

Drugs to Treat Fibromyalgia Just as Likely to Harm as Help
- http://www.cfah.org/hbns/2013/drugs-to-treat-fibromyalgia-just-as-likely-to-harm-as-help-