Illustration: Is There Life After Meds?, © 2014 created by Billiam James
DD in this case stands for Drug Damaged. AA for Alcoholics Anonymous. Some of the material in this post is likely to disturb some readers. Reading it in conjunction with Here We Stand We Can Do No Other and Dos Centavos – Veinte Euros may help make sense of material that may not sit well with some readers.
The next point to make is this post is totally the responsibility of DH – it does not represent a RxISK position or the views of any of those running the DD groups mentioned here.
Several years ago, in the UK, a number of groups that I know of set up to handle psychotropic drug dependence and damage – one in North Wales and one in Worcester, England. At least one of the groups took their inspiration from the WARM Network, set up by Laurie Oakley in Ohio.
These notes are borne out of witnessing some remarkable individuals I know grapple with the problems of getting groups off the ground and keeping them going.
With 15% of the population of most Western countries taking psychotropic drugs chronically, it’s a fair bet there are millions of us hooked to antidepressants, mood-stabilizers, pain-killers like pregabalin, in addition to benzodiazepines. There are other drugs as well, like PPIs for gut acid, Singulair and related drugs for asthma, and antibiotics like doxycycline, we can get hooked to.
Many of us don’t know we are hooked these drugs and so none of the groups starting up were at risk of being flooded with folk looking for help. Still, it has been a surprise to see how few have got in touch with the groups I know of.
There are a growing number of options for tapering psychotropic drugs so, just as with alcohol, it is increasingly possible to get off meds without the need of a support group like AA. This may explain the lack of take-up. People do an alcohol detox program before going to AA, and many likely figure once clean, they don’t need to go to AA.
AA is a support group but it is not so much about getting us off a drug like alcohol as helping keep us off afterwards.
Some of those in the UK approaching a DD group and directed to the WARM site for an illustration of what is involved recoiled from the mention there of AA and a Twelve Steps approach with its references to God.
Many of RxISK’s most noted contributors have been in AA groups and benefitted from them – even agnostics. There is no incompatability between RxISK and AA. RxISK is not on the side of professionals who are against the self-help that AA offers. AA is no more part of the medical establishment than RxISK is. And it is neither true to say that those in AA have had moral failings and the DD have not. This post, however, will draw some close to artificial distinctions between AA and DD in order to bring out some points.
Whether as absolute as this post will make out, the psychotropic drugs offer a different set of complexities to alcohol. Medical services welcome people dependent on alcohol and can do a pretty good job getting us off it. While staying off is not clean-cut, getting off alcohol is relatively clean-cut.
This is not the case for psychotropic drugs where medical services are often pretty hostile to the idea of us getting off, partly because they have no idea how to do it. They will very rapidly interpret any difficulties in staying off as evidence we need to be back on treatment just as much as a diabetic needs to get back on insulin.
While there has a rapid and welcome development of tapering options for psychotropic drugs, tapering is not the answer for all of us. Many of us are left with protracted withdrawal problems that do not seem to happen with alcohol. Alcohol causes cravings but not protracted physical problems that can make life beyond miserable or at least very difficult.
Some of us attempting to stop psychotropic drugs, simply cannot. There are no guaranteed ways to get us through withdrawal as there are for alcohol. In the absence of a remedy that relieves the suffering, the dysphoria and agitation linked to psychotropic drug withdrawal can be so great that it becomes all but impossible to carry on tapering or remaining drug free.
Those of us who stop psychotropic drugs expecting to feel better often have ongoing problems that, while perhaps better than the problems on treatment that led to withdrawal, are not insignificant – See The Color of Life.
This means that many people in a DD support group will still be on treatment and not in a position to stop soon or even commit to stopping.
Many in a DD support group may be taking more alcohol than they should but AA are unlikely to be of any help to them.
Anne-Marie’s case brings this out. Referred to AA because of problem drinking, when she told them that she was sure her drinking was caused by her SSRI, she was told that this was typical alcoholic thinking proving better than anything else she was an alcoholic. See Driven to Drink.
She was right and they, and every AA branch around the world, were wrong.
It now looks like the influence of the psychotropic drugs we are on may extend to causing not just alcoholism but other substance misuse problems – Did my Doctor Drive Me to Become a Substance Abuser.
Having made all these points, some people who are psychotropic drug dependent benefit from AA and its approach.
There is a notable feature to AA that DD groups must envy. They manage to retain members, over time, so groups can expect to continue indefinitely even if the members change.
One aspect to what AA do that may help explain this is that everyone has a sponsor, a point person they can turn to outside meetings, when they are feeling brittle or vulnerable.
DD groups are in a different position. They may not have people who are ‘sober’ between spells of being on drugs, or people who are effectively off but committed to staying in the group. They may need more people who have been through the mill and are willing to stay and help others.
Part of the problem with a sponsor in DD is that while there are overlaps, everyone’s experience is individual. The drug that is impossible for me may have been absolutely no problem for you. It is not clear what a sponsor might bring to the picture.
Having made this point, I need to also say that some DD groups do provide extraordinary support from some of those involved who themselves are not drug damaged but have learned an extraordinary amount from engaging with those who are.
To some extent AA sponsors operate on the basis of the Golden Rule – Do unto others as you want to have done to yourself. They can even figure this might require the tough love required of moral problems.
In DD, the Platinum Rule that apples to disabilities – Do unto others as they would want to have done to themselves – is a better one than the Golden Rule. See Are Women Better at Everything.
Sometimes in DD groups, people who have successfully navigated the health system seem to think if others just do what they did everything will be okay but, while we can learn from others, typically DD problems are not just a matter of following the example of another. Everyone’s course is different. Those supporting us need to be able to take this into account – which is difficult when there is so little reliable knowledge and pet theories abound.
Another aspect of what AA do is their famous commitment to The Twelve Steps. While both AA and DD are committed to Recovery – the AA Twelve Steps do not seem appropriate for DD groups.
Here are the AA Steps with possible DD Steps interleaved.
We admitted we were powerless over alcohol — that our lives had become unmanageable.
We admit we have tremendous difficulties with our medicines, which often make our lives unmanageable. But in great part our difficulties stem not just from the medicines but a system that denies these medicines can cause problems.
We are close to powerless in the face of a system that tolerates a ghostwriting of a medical literature we should be able to depend. This literature actively, sometimes fraudulently, hides the problems we suffer from – denying that they exist – and will attempt to destroy us if we do a Luther on it and say Here We Stand We Can Do No Other.
All too often the result is that even family and friends take the side of the ‘doctor’ or other healthcare professional. Even healthcare professionals who have nothing to do with medicines, like psychotherapists who claim to find drugs deeply problematic, will take the system’s side.
Came to believe that a Power greater than ourselves could restore us to sanity.
Not so. Any power greater than ourselves seems to have deserted us, facing us with religious, political and medical authorities, who castigate us for the approach we are taking – the approach we have to take. It can be difficult to remain sane in these circumstances.
While we may be struggling with the power of chemicals, and this may have been where WARM and DD groups began, an important element shared in a DD group is the element of having been hoodwinked and how to ensure We Don’t Get Fooled Again.
Very often the main mistake people in a DD group have made has been to trust in their doctor.
Made a decision to turn our will and our lives over to the care of God as we understood Him.
While it may be a good idea not to struggle too much with our situation, there is very little evidence that waiting for a God is likely to provide Care or a Cure. Its time to be Protestant about it and figure that God helps those who help themselves.
Made a searching and fearless moral inventory of ourselves.
This is part of the problem not the solution. All too often those of us who are drug dependent blame ourselves for everything and fail to appreciate that if not entirely blameless, we are much less to blame than authority figures in the System like to think. This includes religious, political and medical leaders, who condone the ghostwriting of the clinical trial literature and lack of access to the data from clinical trials, which more than any chemical, has landed us in the morass we are now in.
Admitted to God, to ourselves, and to another human being the exact nature of our wrongs.
We need others to tell us we are not in the wrong. This needs repeated telling. And we ideally need others to hold the medical and religious authorities to account for the wrong they have done to so many.
Its time for religious, political and medical leaders to admit to the exact nature of the wrongs they have done to us.
Were entirely ready to have God remove all these defects of character.
If we have got to the point of participating in a DD group, we show strength of character and God would be better employed building on our strengths rather than removing them.
Humbly asked Him to remove our shortcomings.
It would be better if ‘He’ removed the shortcomings of the physicians and others in health services as well as our religious leaders.
An old Southern US joke applies. A black man thrown out of a Church in the South pleads with God to change the hearts of those inside so that he can enter and pray. A voice comes from Heaven tells him, my son, I’ve been trying to get in there for three centuries.
Made a list of all persons we had harmed, and became willing to make amends to them all.
We almost certainly have caused harms to others – and we hope that they can appreciate the role of medicines in what happened and help us get back to being someone who can be responsible for ourselves.
If they retreat behind a hedge of harms done to them, none of us are likely to be able to move forward.
Made direct amends to such people wherever possible, except when to do so would injure them or others.
We can try to explain the issues to friends and family, but they are unlikely to listen in many cases, and quite likely to make things worse by insisting we do what others – the professionals – tell us. They are unlikely to tolerate what they may see as out attempt to palm responsibility off onto a drug.
Continued to take personal inventory and when we were wrong promptly admitted it.
While there may be things we were wrong about and should take responsibility for, it is complicated because pretty often we are likely to take responsibility for far too much including things our doctors or others should be responsible for.
Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
Our pressing need is to find out what these drugs are doing to us. We also need to take stock of a world which bombards us and others with messages that there is a fix for our problems, ask our Doctor if X is right for us. This is a world that religious, political and medical leaders connive with.
We need to steel ourselves in the face of these siren calls to avail of a quick fix and support others to put ear plugs in also. These siren calls will continue after we get clean of the medicines we have been on and the system will remain keen to get us on medicines for our bones or cholesterol levels, for instance, even to the point of denying us other medical services, or increasing our insurance premiums, unless we do as we are told.
Having had a spiritual awakening as the result of these Steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs.
We now realize that no-one wants to listen to or look at us, as we are, anymore than they would want to look at women who have had acid thrown in their face. Like those women, we need to find ways to harness the power of the powerless.
If this sounds like the message of the Christian Gospel don’t be put off.
Drug Damage Groups
At present the drugs of greatest concern are
- Antidepressants – all antidepressant groups but serotonin reuptake inhibiting drugs in particular which include some antibiotics, pain-killers, antihistamines and others. There are far too many posts on RxISK about damage from antidepressants to list even a fraction of them. The ones most pertinent here are the ones that turn up on the RxISK blog page under the Withdrawal Tab along with Girl on a Hot Tin Roof.
- Antipsychotics – all of them but Quetiapine (Seroquel) and Olanzapine (Zyprexa) are among the worst. See Sally’s Story, Still Treading Water, The Invisible Doctor, Abilify From the Inside Out and The Once and Future Abilify and many others on RxISK.
- Mood Stabilizers – many of us think we are on a mood-stabilizer when in fact we are on an antipsychotic or an anticonvulsant
- Anticonvulsants – these can cause all the problems that antidepressants and antipsychotics can cause from suicide to dependence and many other life-threatening physical problems. Lamictal, lamotrigine is a real problem. See all posts under the Anticonvulsant tab along with Going on Depakote and Coming off Depakote.
- Benzodiazepines – the problems the benzodiazepines cause are to some extent accepted by the System. What is less accepted is that the System causes these. There is instead a lingering suspicion that if we are having problems it is down to some weakness in us – others, after all, seem to be able to stop without problems.
- Gabapentinoids – just when the benzodiazepine problem was caught and we thought it was now safe to go back in the water, the gabapentinoids, Pregabalin Lyrica, Gabapentin Neurontin and others turned up. Many of us thought surely doctors have learnt a lesson with the benzodiazepines but no they then began to dish out these closely related drugs in a shockingly liberal fashion – The Day the Lyrics Lied, and Kicking Lyrica.
The chemicals we have been put on, stripped of the information that should make them safer is a big problem. Our deepest problem is not just the chemicals or the missing information but the fact that we are the unlucky ones. The system rolled the dice, we were injured, and the system now looks away.
We can find some within the system, who can help us, but these are pretty rare and a full-blooded commitment to helping us would be likely to cause them problems.
We are the unfortunate ones. No-one likes misfortune, not even those of us who are unfortunate. The company of other unfortunates can be a painful reminder. The company of those who have been broken, however, can be the only company that helps. People who have been there and are not professionals. This is true for both AA and DD.
We are in a horrible situation. Remaining isolated and passive cannot help us and may make things worse. But activism is not the answer either, at least not for all of us. For some of us support and tenderness are the primary need. And if we get out the far side of our problems, getting on with life rather than trying to change the world can look a very attractive option.
Getting on with life can be tricky when taking medicines very often symbolizes to others that we are competent again. They breathe a sigh of relief – they are not going to have an outburst that will disturb their more fortunate lives.
We, on the other hand, must continue to search for an understanding of what causes our drug induced damage and ways to remedy this, while also attempting to find a way to transcend our misfortune without turning to system sanctioned options.
The Vaccine Violated
There is now an enormous group of people with a lot in common with the DD and these are the Vaccine Violated. In many countries, there are tens of thousands severely damaged folk who also face a System that denies their existence.
Some have banded together to do their own research and find remedies that that the System is not willing to embrace.
This is marvellously represented by Brianne Dressen and the many others working to create REACT19 and to support the thousands they know who need just the kind of support that comes from a personal touch, from an element of tenderness that goes beyond understanding, along with top-grade research that people are forced to do for themselves.
Other than those who have become immediately suicidal, the DD have mostly found themselves in slowly heating water unable to escape. The VV in contrast have been dropped straight into boiling water. What the VV have done holds lessons for everyone who has been injured by treatments.