Listening is Love: Peeling Back the Layers of Stigma Surrounding Mental Illness, Medication, and Withdrawal
Stigma is a mark of disgrace that sets a person apart from others. When a person is labelled they are no longer seen as an individual but as part of a stereotyped group. Negative attitudes and beliefs toward this group create prejudice which leads to negative actions and discrimination.
Stigma is very often felt by individuals who have a mental health diagnosis:
Diana: When I disclosed that I was diagnosed with depression to a co-worker, she asked me, “what do you have to be depressed about?” Being asked to justify my illness made me feel even worse. No one asks people with physical illnesses these types of questions.
Phillip: stigma is a collective social hush. It forces me to bottle up my emotions, feelings, and thoughts. This is wrong. It should be socially acceptable to discuss who you are.
Nancy: I lost 3 best friends when I opened up to them about my mental struggles. One girl’s parents didn’t want her to hang out with me anymore.
Some people welcome a diagnosis because it’s helpful to have an understanding and name for what is going on. It can be comforting to find that what you are dealing with is a known condition and experienced by others.
Others argue that stigmatization in mental health is due to being labeled with a mental disorder when there is no medical or biological evidence to support the diagnosis.
For example, someone going through a rebellious phase might be given the label “oppositional defiant disorder.” A younger child in a classroom who is less developmentally mature than the others will sometimes receive a diagnosis of “ADHD.”
Someone who is grieving or sad, or even temporarily unhappy about their circumstances might get a diagnosis of depression or “bipolar disorder.” Naturally shy people can be labeled with “social anxiety disorder.” Some people believe these labels are subjective and based on opinion, as there are no medical tests to pinpoint specific conditions.
More and more, mental health issues are being viewed as natural responses to trauma, not brain diseases. And because labels can become part of your identity as well as part of your permanent medical record, the stigma can last throughout one’s lifetime.
So while it is acknowledged that people do experience emotional distress and behavioral difficulties, some people would rather not receive a label, and believe that the medicalization of these issues is not grounded in science, but primarily serves to benefit a healthcare system that is partnered with drug companies.
The bottom line is as was stated above: it should be socially acceptable to discuss who you are. If you identify with a label, if this is part of how you understand yourself, you should be able to speak about it in those terms. No one should try to shut you down, even if they have different beliefs or if they had a different experience. That also applies to individuals who reject being labeled. Basically what each of us need is to be heard.
Adding Medications to the Mix
So, you’re in distress, you receive a label which is often felt to be stigmatising, now it’s time to pass the meds.
When “Dr. Patterson” prescribes citalopram to patients, the conversation usually goes like something like this:
Dr. Patterson: Citalopram is a Selective Serotonin Reuptake Inhibitor (SSRI) that belongs to a group of medicines called antidepressants. These medicines help to correct certain chemical imbalances in the brain that are causing the symptoms of your illness. Citalopram Tablets are used for the treatment of depression and when you feel better, to help prevent these symptoms recurring. Citalopram is also used for long-term treatment to prevent the occurrence of new episodes of depression or if you have recurrent depression. Citalopram is also used to relieve symptoms if you are suffering from panic attacks.
Mary: Should I be worried about side effects?
Dr. Patterson: I have prescribed citalopram to many of my patients and almost everyone responds very well. You might experience a bit of nausea, headache, or dry mouth at first, but these usually resolve within a few days. Don’t stop taking your medicine, even if you feel it is not helping. It can take a week or two to start feeling better but you really should have more energy after 4-6 weeks. I want you to call me if you start to feel worse or have any questions.
Dr. Patterson: I wouldn’t worry about it. Yes that can happen but I’ve never seen it.
When you got your prescription filled, it came with an informational leaflet. How many actually read it, and does it differ from what was just mentioned by Dr. Patterson?
Patients report back
A person goes home and takes the medication and visits the doctor for follow-up. Each of the following are reporting their effects after 6 weeks:
Brian: The medicine worked, I feel better.
Dr. Patterson: That’s great! I’m glad you feel better. I’ve had very good success with this citalopram, it’s state of the art medication.
Dorothy: I don’t feel any different.
Dr. Patterson: We can augment your treatment with an additional medication.
Felicia: My mouth has been very dry, and now I’m constipated.
Dr. Patterson: Yes, this is common. Perhaps we can try you on Zoloft. One of its side-effects is diarrhea so…
Mary: I’ve been so dizzy and I keep getting headaches.
Dr. Patterson: Yes, this is known to happen. If it’s really bothersome we can try a different SSRI.
Will: I stopped taking the medicine after two weeks because I’ve had brain zaps that feel like electric shocks, as well as sexual problems. The brain zaps have gone away but I’m still having sexual problems.
Dr. Patterson: Didn’t you say you stopped the medication after two weeks? What you describe is not even possible, the drug is no longer in your system.
Will: Well, this is what I am experiencing and I need to know what can be done about it.
Dr. Patterson: Listen, I’ve never heard of anything like this in all my years of training. Never have I experienced this with any of my patients. I’ve seen nothing about this in medical journals and let me tell you, there are millions of dollars spent on researching these medications. If this was an issue I would know about it.
Will: But I’m telling you, this all started with the drug.
Dr. Patterson: It is more likely that these are symptoms of your mental illness.
Again, stigma is a mark of disgrace that sets a person apart from others. In this case Will, and others like him, are now viewed either consciously or unconsciously by practitioners as “difficult patients.” As you can see, there can be another layer of stigma for those who are med harmed.
Rule of Thumb
Many survivors of this type of treatment have a rule of thumb: take special care with any medication that has a facebook support group for people trying to recover from it. Everyone in the support groups, whether online or the physical community, say the same thing: we weren’t told about the risks. Just because the doctor doesn’t know about risks or take the informed consent process seriously doesn’t mean you can’t. As the the CEO of your own healthcare, always remember that you are the one who will experiences the outcome of a treatment. So educate yourself and choose carefully.
This applies to ALL classes of medications. When doctors prescribe, they are relying on industry sponsored drug testing, and their industry sponsored medical education, including what is printed in top medical journals. There is no access to some of the most important drug company data on clinical trials, so even if your doctor wanted to fully verify safety and effectiveness, it is impossible to do so. Doctors who are paid to put their names on journal articles that are typically written by someone else (ghostwriting) do not even have access to this data. The medical establishment is literally working in the dark while believing all of this is scientifically sound.
The opioid epidemic is the most obvious example of industry-funded fallout. Here are a few more before we move on with stigma:
Dr. Erick Turner is a psychiatrist and ex-FDA reviewer who reanalyzed data on many popular antidepressants and came to vastly different conclusions than drug companies had. (See chart below). He got similar results with antipsychotics. He is also one of the researchers responsible for exposing the dangers of Vioxx, a pain reliever that lead to thousands strokes and heart attacks before taken off the market in 2001.
Dr. David Healy, a psychopharmacologist in the UK, and his team of researchers reanalyzed data for Paxil in children and found similar errors.
Dr. David Diamond, a neuroscientist in Tampa Fl., studied the available data on statins and got similar results.
Results from Dr. Erick Turner’s reanalysis of popular anti-depressants.
All of that is background for why the following kinds of dialogues happen.
The following conversations highlight the absurdity of common reactions to poor outcomes with antidepressants when those same reactions are applied to other situations. These reactions are based on real occurrences and reveal the added layer of stigma for people in prescribed harm community.
Stan: I can’t eat peanut butter. I can’t even be near peanut butter. That stuff nearly killed me when I was 10.
Cheryl: Well peanut butter is one of my favorite foods and I have a peanut butter sandwich for lunch every day. I also make Buckeyes for my friends and family every Christmas and no one has ever had a problem. You must be an outlier.
The authority of science and the medical profession is something we have, as a culture, put our trust in. So when pharmaceutical companies mislead doctors, conversations like this concerning medication end up happening.
Anthony: I feel so much better since having quit sugar. It’s still hard to resist sometimes, but I started to develop some real health issues from it.
Dr. Davis: Your problem is likely psychological, or maybe it’s something else, because most people don’t experience anything like that. People all over the world have been enjoying sugar with no problems for decades.
Imagine how this would feel. This kind of denial is rampant when dealing with the effects of medications.
Juliana: I had no idea that quitting drinking could lead to such intense withdrawal. I’m not sure I can do this on my own.
Doctor: If you want to stop drinking, then stop. It’s generally easy to quit alcohol unless you have an underlying condition. If things get worse when you try to quit, it means you need to continue drinking.
This is the kind of thing someone often hears after telling their doctor they need help with antidepressant withdrawal.
Did you hear about the thesaurus who went to the doctor to report an adverse effect?
He was dismissed, disbelieved, discounted, invalidated, ignored, patronized, belittled, shrugged off, misunderstood, misdiagnosed, mislabeled and of course, medicated.
Let’s continue with some dialogues that compare the appropriate responses received by people who have more socially recognized, or accepted outcomes, to the inappropriate reactions many receive after an adverse outcome with mental health medication.
Dialogue 1 and 2:
Emily: I took Vioxx in the late 90’s and had a heart attack. I feel lucky to be alive. I can’t believe how long it took the company to admit there was a problem and get this drug off the market.
Dr. Miles: Yes, the Vioxx fiasco was a mess. Obviously, none of it involved me or anyone I know.
Sean: I stopped taking Lexapro in the late 90’s and never regained sexual functioning.
Dr. West: Well, I’ve never heard of that. Your problems are more likely due to your underlying depression. In my opinion, you will get better when you decide to get better.
Do you see how the doctor’s ignorance and denial can result in unintentional abuse?
Dialogue 3 and 4:
James: I was exposed to asbestos many years ago and now I have cancer.
Dr. Brown: I’d like to stay in close touch with your oncologist. We’ll do all that we can.
Natalie: I was prescribed a benzodiazepine and developed a long-term stress syndrome after I stopped taking it.
Doctor Crue: There is no way the medication could still be affecting you. It’s been out of your system for too long. If you’re still having anxiety and trouble sleeping I’d be happy to prescribe you a newer benzodiazepine. It’s what we do in a case like yours.
When it comes to healthcare, it’s as if everyone is supposed to be wearing green tinted glasses, and if you end up looking through red tinted glasses, your experience is denied.
Dialogue 5 and 6:
Rita: My 5 year old granddaughter is in the hospital with severe burns that cover her whole body. Her mother gave her ibuprofen for her fever but didn’t know to watch for a rash. If she had known, she would have stopped giving the medicine at the first sign of a rash. Our family is devastated.
Elizabeth: I’m so sorry. I had no idea ibuprofen had this risk.
David: After my 15 year old granddaughter was started on anti-depressants, she became extremely restless. The doctor doubled her dose for this and less than a week later she died by suicide. We didn’t know the drug could cause a condition called akathisia and we sure weren’t told to watch for it. Now we warn others.
Jess: I’m sorry you experienced this but by talking about it so publicly you are pill-shaming and preventing others who need life-saving drugs from getting the help they need. This is scaremongering and people will die because of what you’re doing.
Pill Shaming is the act of disparaging or shaming people for either taking or wanting to take antidepressants or other psychotropic meds (e.g. calling them weak, suggesting they try harder etc.). The act of making others feel guilty or wrong for taking medication.
Peter: My antidepressant stopped working so my doctor and I are experimenting with different medications. It’s a tedious process.
Nate: Well, if you just made some lifestyle changes you wouldn’t need pills.
Richard: If it weren’t for Prozac I don’t think I would have survived my divorce.
Debbie: Antidepressants are a money making scam for big pharma. They turn people into zombies.
When people use the term ‘pill-shaming’ to describe such encounters, it can be appropriate. Pill shaming is both real and hurtful.
It’s like we talked about earlier: it should be acceptable to discuss who you are. This means if you identify with a diagnosis and take medication, if this is part of how you understand yourself, you should feel free to speak about it in those terms. No one should be trying to shut you down, even if they’ve had a different experience. I have seen anti-medication and med harmed individuals use these blanket statements, and in my opinion this is counterproductive.
But, accusations of pill shaming have often been used indiscriminately to misrepresent, dismiss or discourage legitimate criticism of drugs, to shame and shut down people who are telling someone they experienced harm:
Melissa: My antidepressant stopped working so my doctor and I are experimenting with different medications. It’s a tedious process.
Bob: I went through something similar, but the medication ended up making everything worse for me. I was not warned about how hard withdrawal would be.
Melissa: I really, really dislike being told I am being fooled or oppressed because I take meds. On the contrary, I’m empowered to LIVE. Stop pill-shaming.
Angie: I spent years in the system being told my medication side-effects were mental illnesses. This is a human rights issue.
Teresa: You just cannot stop with the pill-shaming, can you?
Quoting James Davies, psychotherapist and co-founder of the Council for Evidence-based Psychiatry in the UK, “’Pill shaming’ has been used in precisely this loose or ad hominem fashion in an attempt to lump important criticism into the category of subtle abuse.”
Because of the lack of access to scientific data, and because the established medical guidelines that are based on industry funded research don’t recognize these risks or address these outcomes, there are real believability issues.
We’ve seen how being given a label and usually medication for mental illness starts the stigma ball rolling, how adverse effects lead to further stigma when no one, including doctors, recognize them as being real; we’ve discussed how people who opt to take medications are often misunderstood, viewed as weak and lazy, opting for a quick fix; and we’ve talked about some who embrace the use of medication, including doctors, feeling threatened by the idea or reality of harm, causing them to distance from a person; and also how accusations of pill-shaming are made to shut down valid criticisms of medication.
A final layer of stigma concerns both holistic practitioners and survivors who have recovered to a significant degree and now want to help others. These are helpers who take great care to offer hope to individuals withdrawing from medication, which is absolutely necessary and important. The problem occurs when acceptance of harsher outcomes is completely absent – a sort of black hole in a the helper’s repertoire.
Isaiah: It’s been 8 years since I stopped taking Paxil, which I only took for 2 weeks. I’ve had sexual dysfunction ever since and my condition is not getting better. My life has been destroyed.
Catherine: You should seriously consider how what you say about being harmed affects others in withdrawal. Your words can cause others to lose hope. Given enough time, everyone heals.
Keisha: It’s been 15 years since I took my last dose of Xanax. Despite intensive self-care and multiple alternative treatments, I still suffer with legacy effects.
Holistic practitioner: I see many patients who come off of their medication to regain their lives and I’m confident in the methods I offer to patients.
Those who do this have yet to incorporate into their worldview the person who remains significantly affected by medications long after withdrawal, and only really see those they feel they are helping. The reality of a long-term injury is discounted in favor of belief in methods of healing that they have seen work for others, or a belief that the person must be doing something wrong. Just as in mainstream medicine, the person must be the problem. If they hadn’t dropped out of treatment they would have recovered. If they had adopted a better mindset, done it another way, if they had just kept at it, doing the right things, which often means paying for services, buying/taking supplements, until one gets better. You WILL recover they say.
In the case of holistic practitioners there is usually no acknowledgment of the value of the online movement where information can be found on withdrawal from patient-experts with lived experience, about the supplements that can often aggravate withdrawal syndromes, how a person is often left with an extremely sensitive nervous system, and how extremely individual each person’s recovery is based on their set of circumstances.
The truth is – Hope is critical, yet some people don’t need hope as much as recognition of what they’ve already been through. Many would ask, can you be with me in this? Can you refrain from asking me to try something else? You’re new to this. I’m not. I’m weary. I’m tired to trying. Will you give me a place to rest?
Your deep listening is where people can find rest.
So how do we balance one person’s need for hope with another’s need for recognition of injury? How do we balance someone’s need for treatment along with their need for information about the risks of that treatment, even when it could scare them out of the treatment? How do we balance our need to be the CEO of our own healthcare when we have an equal need to rely on trained professionals? And most importantly, how can we be better allies to one another?
I don’t have the answers to all of these questions, but I do know that the starting point is through listening, which can seem antithesis to evidence based medicine. Listening is always our surest way forward.
When we truly listen, we drop the labels, suspend judgement, and open our hearts so that the person feels heard. By listening non-judgmentally, we begin to see where a person is coming from even if we don’t yet understand fully or agree with their entire message. We can usually identify many good points a person makes, even if we subscribe to a wholly different point of view. And we can take that information with us, keeping an open mind, so that perhaps later we may understand more fully.
We are better people when we listen, and listening heals people in ways that are seldom seen or measurable on tests. Listening never fails because listening is Love.
This writing summarizes a presentation given by Laurie Oakley at the Holistic Mental Health Network of Greater Cincinnati‘s monthly meeting in February 2018.
References and Further Reading:
Berenson, A., Gardiner, H., Meier, B., Pollack, A. Despite Warnings, Drug Giant took Long Path to Vioxx Recall November 14, 2004, https://www.nytimes.com/2004/11/14/business/despite-warnings-drug-giant-took-long-path-to-vioxx-recall.html
Davies, James. Let’s be Clear about Pill Shaming. November 20, 2018 https://cepuk.org/2018/11/20/dr-james-davies-lets-clear-pill-shaming/https://cepuk.org/2018/11/20/dr-james-davies-lets-clear-pill-shaming/
David M Diamond & Uffe Ravnskov (2015) How statistical deception created the appearance that statins are safe and effective in primary and secondary prevention of cardiovascular disease, Expert Review of Clinical Pharmacology, 8:2, 201-210, DOI: 10.1586/17512433.2015.1012494 https://www.ncbi.nlm.nih.gov/pubmed/25672965
Healy, D., Lewis, S.Moore, J.;Past Wales Senedd Awareness Day December 11, 2018; https://www.youtube.com/watch?v=4fZD2kb_LYM&t=2468s
Innenan, Jack, Stronger than Stigma: Mental Health Short Film; Youtube, April 7, 2015 https://www.youtube.com/watch?v=Koss6rrPlw0
Scott W. The Placebo Effect: A Conversation With Dr Irving Kirsch. Glob Adv Health Med. 2012;1(5):10-1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4890090/
Turner EH, Matthews AM, Linardatos E, Tell RA, Rosenthal R. Selective publication of antidepressant trials and its influence on apparent efficacy. N Engl J Med. 2008;358(3):252–60. https://doi.org/10.1056/NEJMsa065779
Cincinnati Withdrawal and Recovery Meeting Facebook Page:
WARM Network Website: https://warmnetwork.net