Editorial Note: This post by James Bennett, a research coordinator on RxISK, follows on from last week’s Everyone has the right to challenge “Scientific Experts”. The article accompanying the image of War on Science from the National Geographic featured in that post made the case that we increasingly live in a world of tribes – the tribes who see vaccination as an unmitigated good or a harm, the tribes who believe in climate change and those who don’t and most of us get our views from the Tribe we belong to rather than think them through ourselves. When it comes to your health a tribal response is rarely a good thing. The reason we make drugs available on prescription only through doctors was supposed to be as an aid to each of us to hang on to the middle ground between company marketing and complementary or alternate medicine. But rather than be a bulwark against tribal responses, all too often doctors seem to lead the pack.
The Internet has had a huge impact on many aspects of life, including the way many of us deal with matters concerning health. Whether just looking for lifestyle tips or seeking detailed help for a specific diagnosis, we now have the ability to access information from health organisations, doctors and medical researchers on a global scale.
Some may be able to seek out treatment ideas that they simply wouldn’t have known about. Not only is there greater scope to connect with health professionals, but we also now have an unprecedented ability to share knowledge and experiences ourselves.
One of the areas that has seen significant changes is mental health. Day or night, sufferers can now connect instantly with others like themselves in forums and social media groups all around the world, who can offer advice and emotional support.
Through these new media channels, mental health has become a hot topic, with charities and other organisations reaching out to the public to raise awareness and to educate.
Such a scenario would previously have been unimaginable. But, behind the Utopian facade there are some less desirable realities.
Medication has increasingly become the first line strategy for dealing with mental health issues, with antidepressants being among the most commonly prescribed drugs.
However, there is significant reluctance from many involved in mental health, both professionally and in voluntary groups, to discuss serious side-effects. While the influence of pharmaceutical companies is never far beneath the surface, things have taken an usual turn. Many who are antidepressant users themselves are now behaving in the same way – not discussing issues.
As a result, a degree of duality has emerged on the Internet, with websites and social media groups often falling into one of two categories:
The first provides mental health advice and support, either for a range of issues or one specific area such as depression or anxiety. However, information about serious drug side-effects is often minimized or omitted completely. Discussion of the risks is sometimes not welcome.
The second category deals specifically with iatrogenic problems caused by psychiatric treatments. They raise awareness of the issues, and provide emotional support and technical advice to people who have been harmed. This can include those who are withdrawing from psychotropic drugs – a process which can last for months or even years.
In November 2013, we published a set of e-mails between RxISK and a leading UK mental health charity, which perfectly highlighted an unwillingness to be candid about medication risks.
The cure or the problem?
Medications for various conditions can have emotional and behavioral side-effects. This is something that can impact those using anti-epilepsy drugs for example.
The same is true of antidepressants. They can cause a range of problems including depression, anxiety, panic attacks, aggression, apathy and emotional numbness. This is vital information for users, but it is something that many mental health organisations rarely divulge on their websites in any substantive way.
It is clear that some sufferers do make a link between psychological effects and their medication, particularly when a problem occurs suddenly, such as when switching to a new drug. But, problems can develop more gradually over time. Coupled with polypharmacy and multiple dosage changes, the issue can become clouded and there is less chance of the treatment being called into question.
A serious problem that generally receives only a cursory mention, if at all, is akathisia. Described as a sense of inner restlessness, it is a complex and highly destructive side-effect of various psychotropic drugs. It can manifest as a physical inability to remain still, but can also be less obvious, presenting as anything from a constant and disturbing unease in the mind, through to an intense emotional turmoil.
It is a similar story for withdrawal. Websites sometimes mention that antidepressants should be tapered carefully, but they are often vague on the details. Despite the well-established 10% reduction protocol, it is still common to see reports in social media from those who tapered over just a few weeks or by taking the medication on alternate days, and then experienced what they believed to be an immediate relapse.
For more information on withdrawal, please see the Guide to Stopping Antidepressants on RxISK and the forthcoming Withdrawal Forum.
The stigma divide
Those who use social media will probably be familiar with the concept of mental health stigma and the anti-stigma campaigns. This refers to the scenario where people find themselves treated differently, and unfavorably, after revealing that they are suffering from a mental health issue. As a result, they can be reluctant to speak out about their problem or to seek help. The campaigns look to address this by raising awareness and by attempting to gain greater social acceptance of mental health problems.
However, this is not the full story. The campaigns fail to mention that those who have been injured by antidepressants and similar drugs, as well as those working to support them, are also victims of stigma. They are often labelled as anti-medication, anti-psychiatry, and are generally seen as trying to upset the natural order of things. Ironically, this is often perpetrated by those who are antidepressant users themselves.
The medical profession is often equally misinformed about medication adverse events and can be hostile or apathetic toward those seeking help, even where the iatrogenic nature of the problem has been acknowledged.
Those who received support while believing they were suffering from a long-term mental health problem, can quickly become outcasts after discovering that their problems were exacerbated or even caused by their treatment.
Illusion of knowledge
Despite the advent of the Internet, increased media coverage and general efforts to raise awareness of mental health, in many ways the situation has actually deteriorated. Much of the information that people need is missing from the places they are most likely to be looking.
While a lack of knowledge can be a problem, the illusion of knowledge is even more hazardous. There are many people who now believe they have a comprehensive understanding of their issues, yet appear to know very little about their medication and how it might be affecting them. Efforts to restrict this information only serves to undermine and discredit the message of empowerment within mental health.
In terms of those antidepressant users who contribute to this problem themselves, there may be no single explanation. It could be a combination of factors.
For some that have connected with other mental health sufferers in Internet groups, perhaps the sense of belonging – the shared experience – becomes more potent than the need to understand the experience itself.
In some cases, the drugs themselves may also be playing a part. Those who have successfully withdrawn from antidepressants often did not realize how their judgement and perception was being affected, until they stopped.
The fact that antidepressants can cause serious psychological problems is seen as threatening to invalidate the experiences of those who are happy with their diagnosis and their medication. Attempts to discuss the issues are sometimes regarded as an attack on pro-choice, when in fact it is the opposite.
The greater good?
It is sometimes said that publicizing the risks of antidepressants and similar drugs would cause distress and lead people to discontinue their treatment. Ironically, withholding this information can also cause distress and result in poorer outcomes, as side-effects become mistaken for features of an ongoing or worsening mental health problem.
Interestingly, there is an element of this approach on both sides of the divide. Concerns that legacy-effects may be permanent are sometimes met with solid reassurance that this is definitely not the case, and they will resolve in time. Those who offer a less certain prognosis can be met with criticism for damaging people’s hopes of recovery.
The reality is that while some people do improve and would even go as far as considering themselves recovered, others are still experiencing significant problems many years later. Clearly, tact and sensitivity are called for, particularly when sufferers are in withdrawal. But nevertheless, it is an interesting observation that people on both sides of the line are willing to present a particular narrative when they believe it is in someone’s best interests.
The Internet is both friend and foe. It has empowered a great many people, and allowed them to take control of their health and their lives. It has connected people in a way that would otherwise have been impossible.
But, the Internet is also a breeding ground for misinformation and has provided another avenue for the influence of pharmaceutical companies to pervade the consciousness of the general public. Critical mass may have been achieved, as the message to oppose discussions of side-effects and to regard the injured as purveyors of stigma, has now become self-sustaining within the mental health community itself.
There is a wealth of information in the public domain about psychotropic medications, from side-effects while taking them, through to withdrawal and legacy-effects. But, the newly diagnosed are unlikely to be looking for this, so it becomes limited to assisting those who already suspect that something is wrong and are seeking answers. It becomes damage control rather than being preventative.
The problem is complex. Efforts to tackle it must be robust, but also carefully considered. Spreading the message is important, but on its own may not be enough to bring about real change, and in some cases can be counter-productive. Adverse events on prescription drugs need to be reported, and the healthcare system needs to be pressured into dealing with them.
The time to act is now, before the fractures in the health landscape become too deep to repair, and any possibility of genuine empowerment is lost.
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If you are experiencing prescription drug side-effects, please complete a RxISK Report to discuss with your doctor.