SAFEGUARDING CONCERNS AND SUPPORT FOR HEALING
As someone supporting individuals through their healing journeys, I am increasingly concerned about the nature of advice and support being offered to those most vulnerable, resulting in what is turning out to be a drastic increase in harm/safety risks. I felt compelled to write this because I don’t know what else to do. I am hoping it helps. It is long but important. Please read on.
This post is an appeal to everyone to please…. just stop for a while and consider what advice you are receiving or offering, and what effect it is having. Let us let go of who is right or wrong… of egos… and truly think of our very vulnerable, unsupported friends who are holding on for dear life, and what the advice/guidance we offer is causing. I am doing the same and I ask you to please, please, don’t let your egos get in the way of doing what is right.
As you know, I do not allow complaints about any specific group, moderator, coach, or other individual offering help, and so this is not a criticism of anyone in particular. The objective is that this is considered a safeguarding message for those providing support and those being supported. I am just genuinely worried about those on the receiving end. Please, please, be cautious and as discerning as you can be.
THE IMPORTANCE OF SAFE AND SUPPORTIVE GUIDANCE
I know this may sound quite dramatic, but the community is become more and more unsafe. This is the result of an underworld of suffering, completely disregarded, gaslighted and invalidated, looking to an unregulated virtual space for answers and support. I think a good job is being done but if what is happening is not contained, there will be an increasing risk regarding loss of life.
So, please… we have to pause and see what each of us can do. I have been receiving increasing amounts of crisis calls daily from people in distress being told their healing depends on following specific actions. I have also recently been informed of people who, sadly, have given up. These were not my clients (people I supported) but they were part of the community and it is always saddening when we lose someone. The calls I am receiving highlight the confusion and despair caused by such directives, especially for those who are most isolated and lack support to make critical decisions or deal with the outcomes – our most vulnerable.
UNPREDICTABILITY OF HEALING
One of the very troubling pieces of advice being circulated is that healing can only occur if certain actions are taken. It is essential to understand that healing is a highly individual process, and no one can predict with certainty what will work for you. Each person’s journey is unique, and what works for one person may not work for another. Claims that healing will not happen without specific interventions are not only unfounded and disproved by anecdotal evidence but can also contribute to increased feelings of failure and despair and increased safety/harm risk.
HARMFUL TAPERING ADVICE
Another alarming trend is the advice to abruptly discontinue or quickly taper a drug the person is taking. Stopping medication without carefully tapering off can have serious consequences. People without expert knowledge should not be telling anyone to stop taking a medication, to up-dose, reinstate, etc. They should not be giving any form of medical advice. The person in need of support should instead be signposted or referred on to someone qualified to do so, with whom they can discuss concerns and formulate a plan.
THE MISCONCEPTION OF WITHDRAWAL DURATION
I am not sure where this originated, but people are freaking out that something else is wrong if they are experiencing symptoms beyond the two-year mark as they are told they could no longer be withdrawal-induced. This is simply not true and is easily disproved by the anecdotal evidence.
Withdrawal can be a prolonged process (beyond 2 years) for some individuals, and its duration can vary significantly. Statements suggesting otherwise can lead to unnecessary worry and despair and is causing escalating harm/safety risk levels. Please stop.
THE ROLE OF EXERCISE AND ACTIVITY
Exercise and activity are generally beneficial for health, and for those whose symptoms are not exacerbated when active, it is wonderful. I know people who exercised throughout withdrawal, who felt being able to do so made their healing experience easier.
However, the idea of pushing to be active in order to heal is misleading. This is not true, and the anecdotal evidence suggests otherwise. It is crucial to recognise that those making such claims may not have had enough experience to witness the full spectrum of withdrawal scenarios.
Each person’s capacity for physical activity varies. Overexertion can sometimes worsen symptoms or cause the emergence of new symptoms. It is crucial to listen to your body and progress at a pace that feels right for you, without feeling pressured to meet unrealistic expectations.
The advice to push through has been particularly harmful to people who are bedbound due to physical symptoms, causing them to believe they will never heal and, again, increasing their harm/safety risk. There are countless individuals in withdrawal who, regardless of their strong intentions, face severe physical limitations. These can include being unable to walk, run, or even move without assistance. Some people need to be hoisted or lifted to the bathroom, and for others, exercise tolerance is so low that even minimal physical activity can leave them bedbound for extended periods.
Giving this advice can have detrimental effects. It is vital to approach each individual’s situation with empathy and understanding, recognizing that no one size fits all and pushing beyond one’s current physical capacity or threshold for some people can be harmful.
DIET AND SUPPLEMENTS
The assertion that specific diets, protocols, or supplements can expedite healing is not supported by anecdotal evidence. Furthermore, the reactions to some of the recommendations can vary from people feeling they helped somewhat or at least did not harm, to people ending up in the ER or A&E with severe reactions. Claiming they are the keys to recovery can lead to frustration and disappointment when results are not as expected. I cannot begin to tell you how many people book sessions with me after having tried recommendations that resulted in absolute hell. For some this has reinforced a belief that they will never heal and, consequently, increased feelings of desperation. Please… it’s okay and necessary to examine diets, etc., but please stop saying someone won’t heal unless… that they won’t heal without them. It is simply not true. Unless the person has severe deficiencies or other unrelated medical problems that should be addressed, they will certainly recover.
MISLEADING STATEMENTS AND THEIR IMPACT
Support groups save lives. They can provide much-needed connection, validation, and understanding. However, they can also be sources of vicarious trauma if not managed carefully. Constantly focusing on others’ struggles can amplify one’s own anxiety and fears. It is vital to balance participation in such groups with self-care practices and take breaks.
Please do not accept a verdict about your healing from anyone and I mean anyone. It doesn’t matter if the person is the head of Neurology at any of the most prestigious hospitals in the world or a deemed withdrawal/PAWS/Neurotoxicity/ABIND expert. It is a 100% certainty that no one can predict what will happen when it comes to this healing process.
There have always been individuals who join support groups or contact others privately to convey the message that healing is impossible or that not everyone heals. This is deeply concerning. I have seen people lose their lives because of this message and I have seen these messengers heal. Many of these individuals who share this message fail to disclose important information about their own situations, such as other medications they are taking or recently discontinued (including antihistamines also used as antipsychotics, betablockers, and other drugs known to interfere with healing), as well as other aspects of their health such as past surgical procedures, reactions to vaccinations, trying remedies that were later reported to be harmful, or what can be referred to as “running on a broken leg” – pushing their bodies to exertion and overstimulation before the nervous system is able to handle it.
BALANCE AND INDIVIDUALITY IN HEALING
It is good to be proactive. Try what resonates and challenge yourself healthily, dipping your toe in before diving into the pool. Most people will find that they feel more of an inclination to increase activity and try new things as they heal, and their recovery may coincide with a specific activity. They may believe this is what healed them. Does this mean everyone who tries that activity will heal? No, not really. So it is better to not tell people they won’t heal unless they do what you did. This healing process does not work like that.
If you are experiencing dizziness, severe head symptoms, vision impairment, or sensitivity to sensory overload, do not let anyone guilt you into doing activities that could be dangerous, such as driving. Listen to your body and prioritise your safety.
It’s important to engage in activities that support your healing without compromising your or another person’s safety. Remember, taking care of yourself is paramount, and there is no shame in setting boundaries that protect your health.
Be cautious when told that a particular method is the definitive solution to your healing journey. Instead, engage in practices that resonate with you and feel right for your body. Trust in your body’s self-healing capabilities and allow yourself the time needed for it to restore homeostatic equilibrium. The path to healing is highly individual, and the most effective approach is the one that aligns with your needs.
HEALING IS A PERSONAL AND VARIABLE PROCESS
The key point here is that healing is a deeply personal and variable process. What works for one person may not work for another, and for decades many have healed without following the ultimatums now being given: you won’t heal unless… The nervous system has remarkable abilities to recover and adapt over time.
If you believe you won’t heal, so be it. You took a drug that, due to homeostasis, your body had to adapt to its presence. Now that you have discontinued the drug, your body must adapt to its absence. This is also homeostasis in action and what you experience during this time, no matter how intense or cruel, is part of the healing process. In time, your body will get it right.
So, if you don’t believe you will heal, that’s up to you. However, saying this to someone who is vulnerable runs the risk of increasing feelings of dispair and wanting to give up. I know this because this is how I have become aware of what is said in the community… Having to get people to safety as a result. Please… please… listen. You have no right to say this to anyone else. I repeat… For every person you tell they won’t heal, you are feeding a voice that has been telling them to give up. Please, please, keep your despair to yourself.
If you have been told you won’t heal and you are within the timeframe that others have healed, why not wait and see? Allow yourself the possibility of healing and leave the others to hold on to hope and have the space and time they need to recover as well.
TAKE GOOD CARE
Take good care of yourselves and each other. I understand that those offering advice do so with the best of intentions and we are all grateful. However, our friends who receive the advice are, as you know, extremely vulnerable, suffering intensely, and in some cases are struggling with thoughts and sometimes feelings of never healing and wanting to give up.
It is therefore essential to critically evaluate the information you share and consider the consequences before passing it on. Are you 100% certain that what you are saying is true, evidence-based, and case-appropriate? Have you had any safeguarding training? Do you have supervision or other support to guide you and take care of yourself? Do you understand the emotional fragility and vulnerability of the people you are supporting? Keep recommending your approaches but don’t tell people they won’t heal if they don’t do as you say. It is simply not true.
Based on what I am hearing, I can unhesitatingly state that the anecdotal evidence does not support any of what I am being told. So not only are people being frightened literally to death, but what is being said is not evidence-based.
I have been sent screenshots of statements from which pertinent information (about other drugs, practices, etc.) that would better explain, has been withheld. Due to confidentiality, I can never correct omissions I see online. Anyone who does this, please… it is not right. I am begging you, please… for the sake of those at highest risk, please either tell your story in its entirety, or keep your doubts about healing to yourself. It is not fair. It is not right. Please consider the people whose brains hook whatever they read online and “run away” with it.
CONCLUSION
To anyone reading this who is waiting for healing to be completed, remember this is a personal journey, and it is important to go safely and gently, with care and self-kindness. Please, be cautious about what you accept as good advice, and take care of yourself… prioritise your well-being. Your healing path is unique, and you deserve to navigate it with the best possible support and information. I encourage you to not accept as your truth, anything you would not want to become your reality.
When told that a particular method is the definitive solution to your healing journey, ask yourself how come hundreds of thousands of people healed without it. Protect yourself. Engage in the practices that resonate with you and feel right for your body. Trust in your body’s self-healing capabilities and allow yourself the time needed for it to restore homeostatic equilibrium. The path to healing is highly individual, and the most effective approach is the one that aligns with your unique situation and your needs.
Finally, don’t lose heart. Don’t lose hope. In this my nineteenth year of supporting people who were once where you are now, never has anyone come back to say, “I hate you Baylissa! I wish you had left me to give up.” No, they are happy they held on and have now healed or are healing. Even in the longest, worst cases, eventually healing became evident.
Don’t get caught up in the drama. Make your story your own. Keep holding on and allow your body additional time to complete the healing process. Please.
With much compassion,
