A recent study, published in BMC Psychiatry, explores the lived experience of individuals taking antidepressant medication. The qualitative study, conducted in New Zealand, shows the complexity and diversity of experiences for antidepressant users. The authors report that 54% of respondents had predominantly positive experiences, while 44% had either negative or mixed experiences. The researchers, led by Kerry Gibson, associate professor at the University of Auckland in New Zealand, write:
“This research points to the inadequacy of asking the simple question: ‘Do antidepressants work?’ Instead, the value or otherwise of antidepressants needs to be understood in the context of the diversity of experience and the particular meaning they hold in people’s lives.”
Antidepressants are commonly prescribed in developed countries, with 1/9 adults in New Zealand receiving antidepressant prescriptions each year. This widespread use of antidepressants continues despite an increasing number of studies that question the effectiveness of antidepressants. Much of the research on antidepressants examines their neurochemical efficacy based on changes in numerical scores on depression symptom questionnaires. These studies do not provide insight into the lived experience of people taking antidepressants. The few qualitative studies that have been done, using small samples, tend to note the negative or ambivalent experiences of antidepressant users.
The authors highlight “that while people actively make meaning of their experiences of medication use, they do so in the context of prevailing social ideas that help to shape the way that these can be thought about.” In an environment that promotes antidepressant use, yet increasingly questions whether antidepressants are effective, it is important to better understand users’ qualitative experiences.
In a large-scale qualitative study conducted in New Zealand, the researchers aim “to explore the potential diversity of experiences with antidepressants and the meanings attributed to them.” The authors analyzed data from 1,747 participants who used antidepressants within the previous five years. The online, one question, open-ended survey asked, “In my life antidepressants have been…”
The majority (77%) of participants were women. Half of the participants (52%) had taken antidepressants for over three years and 69% were taking antidepressants at the time they completed the survey. The researchers organized the responses into three categories: positive experiences, negative experiences, and mixes experiences with antidepressants.
Positive Experiences:
Just over half (54%) of respondents described positive experiences with antidepressants. Their reports fit into five themes.
‘Necessary for disease treatment’: The researchers report, “many participants described antidepressants as a necessary treatment for a ‘mental illness’ often referring to the ‘serotonin deficiency hypothesis’ which sees depression as a result of a chemical imbalance.” This theme is seen in participants who compared antidepressants to diabetes or heart medication.
‘A life saver’: Many respondents described intense relief from distress. Some implied that the medication prevented suicide. One participant wrote, “I truly feel that I would not be alive if I had not taken them.”
‘Meeting social obligations’: Participants also described how the medication aided them in returning to ‘normal’ functioning. One person wrote, “[Antidepressants are] the sole reason I can now function as normally as possible as a human being and a participating member of my family and community.”
‘Getting through difficult times’: The authors report that antidepressants were also seen by some “as a temporary way of dealing with challenging circumstances – including interpersonal and social problems.”
‘A stepping stone to further help’: Some participants viewed the medication as a temporary solution to be used as a step toward other coping strategies or supports. This is illustrated by a respondent who wrote, “I have had such good therapy that I have been able to address the wider issues that had contributed to my mental state. …Without the medication though, I would never have had the ability to do this.”
Negative Experiences:
The researchers report that 16% of participants recounted negative experiences with antidepressants. These experiences were categorized into five themes.
‘Ineffective’: One participant highlighted this theme by writing, “They were a waste of time and did not help me.” Other participants reported feeling disappointed by the medication, or finding lifestyle changes such as diet and exercise more beneficial.
‘Unbearable side effects’: Many participants described the negative side effects of antidepressant medication. One person wrote:
“Each one has had a worse effect than the previous…. I can’t remember them all. It started with memory loss then progressed to me becoming borderline catatonic staring at the wall for hours unable to stand up. Within a few weeks and genuinely terrified. It was a relief to go back to the misery of depression after these experiences.”
‘Loss of authenticity/Emotional numbing’: The authors report that feeling “like a zombie,” “numb,” and “alienated from others” was a common response from antidepressant users.
‘Masks real problems’: The researchers also describe “that antidepressant use was felt to invalidate the genuine suffering participants had experienced.” One participant wrote, “In my life antidepressants have been prescribed to me to cover up what was wrong, and to me were a fake fix.”
‘Loss of control’: The authors report that some participants felt their use of antidepressants was “a sign of failing to ‘cope’ or as a sign of dependency.” Some participants connected this to not feeling in control of their treatment decisions or feeling “bullied” into continuing the medication by providers.
Mixed Experiences:
Over a quarter (28%) of participants reported mixed experiences while taking antidepressants. These responses were categorized into four themes.
‘Benefits vs side effects’: The authors report, “Many participants wrote about how using antidepressants entailed a constant struggle to balance perceived benefits of the medication with side effects.” Sexual dysfunction was the main adverse effect discussed. However, for these individuals, side effects were a “necessary evil.”
‘Calmer by not myself’: According to the researchers, another theme demonstrated that “participants felt grateful that antidepressants took the edge off their distress but also struggled with a sense that they did not feel ‘like themselves’.”
‘Fear of dependence versus stopping medication’: Many participants reported not wanting to be dependent on medication, but fearing what would happen if they discontinued it. Some participants also described receiving little information or advice on how to come off the medication or being afraid of withdrawal effects. One participant illustrates this theme:
“The thing is that I have been on them so long that I have no idea what it would be like not to be on them. I would love to come off them but they have become such a ‘normal’ part of my life since I was approximately 15 years old that I am not sure I would cope without them.”
‘Finding one that works’: Some participants described mixed experiences because of the struggle to find the ‘right’ antidepressant. For example, one person wrote, “I have been on MANY different antidepressants. None of them were helpful at all to me until I tried Fluoxetine 4 years ago. My life now is greatly improved by taking this medication and a quality of life has returned.”
The authors find, “Our research suggests that meanings underpinning positive experiences of antidepressants are much less homogeneous than we might have anticipated.” They highlight that 44% of the sample reported some amount of dissatisfaction with their antidepressant experiences. However, they also emphasize that solely negative experiences were much less common than positive or mixed experiences, speaking to how complex the decision-making process is when considering antidepressant medication. The authors also note the impact of the general discourse around antidepressant medication:
“In spite of limited scientific support for the idea that antidepressants correct a chemical imbalance, participants have clearly been influenced by myths about ‘serotonin deficiency’ which are widely promoted to the general public.”
The authors conclude, “It is important for mental health professionals to recognize that antidepressants are not a ‘one size fits all’ solution.” The authors urge prescribers not to rely on “misleading information” about chemical theories for depression, and instead provide balanced information on the evidence of antidepressant effectiveness, including information on side effects and withdrawal effects, so that patients can make genuine informed decisions about their depression treatment.
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Gibson, K., Cartwright, C., & Read, J. (2016). ‘In my life antidepressants have been…’: A qualitative analysis of users’ diverse experiences with antidepressants. BMC Psychiatry, 16(1), 135. doi:10.1186/s12888-016-0844-3 (Abstract)
All I know is this: I took these damned drugs long enough to know that they were extremely detrimental to me. I will never touch another one of these devil’s tic tacs, no matter what. They turned me into a zombie who was separated from his feelings and emotions; an uncaring and detached person who didn’t care what was happening in life around him. And I didn’t care about what was happening to others around me either; this was somewhat detrimental since I was a hospital chaplain.
Another thing that I know is that depression is not a disease or an illness. This is one of the two great lies perpetuated by drug companies and psychiatry about these drugs; they’re supposedly a “treatment” for an illness or disease. The other great lie is that they cure some kind of serotonin imbalance in the brain. This is the great lie put out by drug companies and psychiatry. When dealing with me do not, under any circumstances, try to foist these two lies off on me because you won’t like the response that you receive.
I am for free choice when it comes to the use of psychiatric drugs. I will never, ever touch the damned things ever gain but if others believe that they help them and want to take them then I support their decision. But, I hope that before they make any such decision that they will investigate the effects of these drugs on the health and lives of human beings.
So, they can produce all the studies of this kind that they want, but it will not convince me that they are something that I should ever take. I remember what my life was like while under the influence of these so-called “antidepressants”, a supposed cure for a disease that doesn’t exist.
I’m not really sure what this qualitative study shows. At one time you could probably have surveyed people who took snake oil and found that a substantial proportion would say it worked.
Marie,
I was one of those folks who swore these drugs were helping as they were destroying my life. So I completely agree with all your points.
I tend to agree as well. I wasn’t so optimistic when I was on antidepressants and saw them not only fail, but make my problems worse. I actually felt really impatient and betrayed (“When are these FINALLY gonna start working?!”). But I have a few acquaintances & friends who currently use them, and several of them seem to be completely kidding themselves that they are working — either out of hopefulness, or of a weird desire to “save face” or maybe a combination. One acquaintance is very candid about every outburst, every episode, every dark thought on Facebook, and has, as far as the rest of us can see, gotten significantly worse over the years as her meds are changed and dosages increased, doubled up, etc (she always makes a public post when there’s been a change, which is the only reason I know). Yet she continuously shares articles defending the meds, always gushing about how they’re a gift from God and she “wouldn’t be alive without them!” It’s difficult because very often, families that have devoted years to these meds (not just the victim, but the husband/wife, kids, etc) will refuse to listen to any criticism of them, shutting it down immediately — even though an honest assessment of their home life would tell them “Yes, as we’ve upped dosages, our family life has gotten worse.” So I don’t put much stocks in reports of people claiming only happy, sunshine results from their meds. People are often completely blind to their own obvious inconsistencies when drugs are involved.
Next: Does Genocide Work?
A: Yes, genocide does work. It is far more efficient at killing large numbers of people quickly, than simply dosing them with psych drugs, and turning them into walking drug zombies…. You can’t make much more profit off dead people, but if you get them hooked for life on psych drugs, then you can profit off them for years, until they die untimely deaths.
There, I hope that answers your question, >oldhead<.
(The earliest reference to "psychiatric genocide"/"genocide by psychiatry", that I could find, is the 1980's. Wonder what took folks so long to realize the TRUTH….????….)….
Here’s an idea how Pharmapsychiatry can band together with the junk food industry. Almost all these psychiatric wonder drugs cause weight gains of 100-200 pounds in the unproductive low-lifes who take them. Since most of them die at 52 or 53 anyhow, who will notice if they start dying a few years earlier. Chalk it up to a lamentable side effect of some of those new “safe and effective treatments.”
I’m eating these delicious new chips that just came out on the market, High in protein; low in carbs; easily processed by the human metabolism. Yummy!
Soylent Green anyone?
Most of the 54% think the way they do because of lies they have been told, rather than the drugs’ effects themselves.
Oddly, I was relieved when I found that the drugs don’t work. I had always felt I was to blame for feeling sick and tired all the time “in spite of” the wonder drugs I took. Now I know the reason I felt so rotten!
I’d say we have to discount anyone who says they are “necessary for the treatment of my disease” as being genuinely positive. Such comments don’t support a positive experience, merely an assumption that things would be worse if they stopped, which is really a fear-based rationale. Obviously, there are some good experiences that people have with antidepressants, but if that’s the main “positive experience,” it’s not very convincing, because “treating a disease” isn’t an experience, it’s a belief system, one that many are indoctrinated into believing.
As an example, my wife and I were asked in our childbirth class for our second son how the birth of our first son went. We both replied it was “pretty good,” until we were asked some more specific questions, during which we recalled not being allowed to eat, not being allowed to open a window, my wife being called out of the shower to visit the doctor who never arrived, my wife being given sleeping pills under pressure from the nurse, only to be awakened an hour later by someone taking her blood… but none of these experiences were conscious as we said the birth was “pretty good,” because we did as we were told we had to, and were not aware of any other options. Today, having experienced two homebirths, one with Ginny in a hot Jacuzzi tub, with capable midwives in attendance, I can say that our first birth pretty much sucked. Antidepressant users who don’t know of other options are likely having similar experiences and reporting similarly unmeaningful responses to the question of “do they help?”
Simply a realistic observation: “Participants were informed of an online survey via widespread media advertising. The criteria for participation included having been prescribed antidepressants in the last five years, living in New Zealand and being 18 years of age or over. The survey was available online from March 2012 until January 2013.”
If I was working in marketing for a pharmaceutical company in New Zealand selling antidepressants from March 2012 until January 2013, it would be an essential responsibility of my JOB to have as many of my representatives and their relatives and friends as possible to have been responding to this survey in a very positive fashion. (But not enough to look suspicious.)
To NOT respond by doing this would mean NOT doing my job properly – i.e. marketing my products.
We’ll NEVER know how much of this occurred, I expect, and the authors would be very unlikely to comment one way or the other (it would – should, again, doing the job – invite “outrage” among such “users” as being invalidated) but it MAY help to account for “In this study, 84 % of participants in this study answered in the affirmative to a question about whether they felt antidepressants had reduced their depression, a number well above that suggested by efficacy studies [5, 26]. This suggests that the findings of this study might over-represent positive responses to antidepressants.”