To accept the withdrawal process is difficult. Those who've never experienced its intensity and the length of time it takes for the Central Nervous System to heal can only imagine the hell that sufferers have to endure. Imagination is weak compared to reality. For this reason only those that have trod this hazardous path before us can really offer support. Friends and family can only do their best to understand and hopefully have a caring and compassionate attitude towards our difficulties.
Sadly, we may lose some friends along the way. Perhaps not lose them completely but they may become silent and not give us the support we need through phone calls and visits. This is a hard fact of withdrawal. Friends and even relatives often refuse to believe our state and merely assume we are depressed or some such vague diagnosis. It may be difficult for them to help us when we are insisting our problems are caused by a drug prescribed by a trusted medical profession. It almost blows apart the foundations of their own health. We must try and accept that our true friends will stand by us no matter what and let go of those less compassionate. The lessening of any stress is essential for recovery.
On a more positive note support may come from the most surprising of places. This is often from those who have experienced bad times in their own lives and know we need loving care and understanding to pull through. I am grateful to the people in my own life who have never given me up. Who have supported me with phone calls and visits when I'm well enough to see them. Who have understood I may have to cancel an outing or visit at the last moment because I'm in a wave. These people are worth their weight in gold and the true friends we will still have when this is all over.
Some Advice for Friends and Families
If someone has an ‘acceptable’ illness that is easily recognized, such as a broken leg, support and understanding are quickly available. The victim will be treated with respect and kindness and ‘Get Well Soon’ messages sent for the duration of the recovery. With this protracted withdrawal syndrome there is nothing to see apart from a pale, agitated patient chained to their bed or chair by something non tangible. No plaster cast, no temperature just a collection of symptoms they profess to having. It’s at this time when support is most needed yet even doctors often turn away, claiming that the many tests they may have done are all negative so it must be a depressive illness or the result of some previous life trauma. How then are friends and carers supposed to accept and give their empathy and understanding? It really is a dilemma all round.
Gradually the intensity of the symptoms and the lack of real life support may cause us to retreat into ourselves. I certainly did. On line support is our saviour and the internet forums, inhabited by people hurting in the same way, become a major tool in helping towards recovery and verification of the myriad of strange and powerful symptoms. We learn not to discuss what is happening to us with those in the outside world. It’s for these reasons that I’ve compiled a list of ‘please dos’ for carers and friends to help provide the loving care and understanding needed by sufferers. The list is based on suggestions that did or would have helped me over the last 17 months.
- Please listen and believe as this illness is very real. We are not exaggerating. We may even be playing down the symptoms so as not to scare you. Please offer a shoulder to cry on and continue your support for how ever many months or years it is needed.
- Ring or visit whenever you can. The sufferer is very isolated and unable to make contact much of the time. There will be days when talking on the phone is difficult or tolerating, even a short visit, impossible. Don’t give up just continue to request a visit. Whether the withdrawer is a close relative, best friend or just an occasional friend he or she needs you now more than you will ever be able to appreciate.
- If you’re giving long distance support ring regularly or send an email to see how your friend or relative is doing. It’s very easy for us to feel forgotten and scared in all this. A kindly word or a card saying ‘Thinking of you’ is all that’s required to uplift spirits. Little things mean a lot to us in withdrawal. Unexpected cards, flowers or simple, heartwarming gifts can have a powerfully positive effect and go a long way towards helping recovery.
- When your friend/relative is able to go out again suggest lunch or just coffee on a one to one basis. Groups of people are difficult for us to face for quite some time as the CNS is easily stimulated by noise or chat. Any outings should be gentle and supportive putting little stress on the withdrawer.
- Always be positive in your conversation and don’t commiserate too much. Try and take a hopeful slant on everything you’re being told. We are easily influenced by negativity especially in a wave. Underline however bad it may be now that one day all this will pass. We need constant reassurance.
- When recovery is well underway and your friend/relative is ready to take up the strings of their life again suggest places to go with them or even courses you could both attend such as Yoga. It’s hard for us to leave the house with someone other than our primary carer, in my case my husband, so be patient and understanding at the start.
- Always remember your friend/relative is highly sensitive. This hypersensitivity may show itself in an outburst of temper, a request to be left alone or an inappropriate remark. Reassure and say it’s ok and give your love and understanding without over reaction.
- Withdrawal is a complex and long hard road. Try and learn about this syndrome for yourself. Later, I will add helpful links to other sites with explanations of the process. Your knowledge will help to reinforce that you care and understand.
- Never give up and disappear. However long it takes continue to give your gentle support it will be greatly appreciated when normality returns. This support may also be in practical ways when the sufferer is totally incapacitated. Offer to mow the lawn, vacuum the house, do the shopping especially if someone lives alone. Depleted energy and a surge of symptoms after physical activity is common in withdrawal however much we want a clean house etc.
Above all ‘BE THERE’ for your friend or relative. However you are able to help, however small the comfort you are able to give (even just a text message) do it. The tiniest show of kindness is worth so much to us. Withdrawal from benzodiazepine drugs is inexplicable but very, very real.
Friends and Families, From Bloom in Wellness (Baylissa Frederick)
"One of the most challenging and frustrating aspects of withdrawal is that feeling of being misunderstood, unsupported and isolated. If someone has diabetes, dystonia (like I have) or other chronic illness, or experiences a life event such as a bereavement, people will more often empathise and offer support. They understand these issues - the required dietary restrictions, medication, etc., and they will be able to tell you the stages of grief. Related charities have been set up and support of every kind is forthcoming because there is enough awareness, shared through every medium, on these topics.
Even an addiction to cocaine, alcohol or heroin receives more attention and holds more credibility than protracted benzodiazepine and antidepressant withdrawal. It is saddening indeed that those in withdrawal are so terribly misunderstood.
(I will add that people with thyroid issues, fibromyalgia, Lyme's disease, chronic fatigue syndrome and other "invisible" or difficult to diagnose problems also have to deal with this lack of awareness and the repercussions. So although this is about withdrawal, we acknowledge that there are others.)
As the days turn into months, sometimes years, some of you may find that friends and family become less accessible and less understanding. No amount of explaining, giving of information and pleas for empathy and understanding seems to work. Withdrawal is so complex, it borders on being unbelievable. And because the symptoms mimic so many medical and psychological conditions, somehow there is more of an inclination for some family and friends to offer a diagnosis and speculate about what else could be wrong, than to just trust what you are saying and give the support needed.
If they could appreciate just how brave you are to endure and cope with the intensity of such frightening symptoms, they would be so proud of you. If they knew that you haven’t even told them half of what you are going through, they would appreciate how strong you really are.
But, you must understand that until you mentioned withdrawal and the people you have met on the Internet, they had no clue. More than likely your doctor has confirmed with them that it’s “all in your head” or “you’re in denial about the return of your anxiety, depression, whatever…”
It doesn’t help that they become impatient and frustrated themselves when you make excuses to avoid going out or you are so out of it that you forget an important birthday or anniversary. Of course they want you to be well again and this is why they become fed of waiting. You may even find that those who were supportive in the beginning, having had a time-frame in mind, lose interest if symptoms become protracted. They just cannot believe a prescribed drug could cause so much trauma and devastation and last so long. Of course, you must be imagining it all.
I know it hurts when instead of being supported you are told:
“You need to snap out of it.”
“Don’t be silly. How could medication make you this sick for this long?”
“But you don’t look sick to me.”
“Why don’t you stop feeling so sorry for yourself?”
“You sound like you’re having a nervous breakdown.”
“I think you’re in denial. You have a problem and you should get seen to.”
“When did you lose your motivation and become so lazy?”
“If you get a job and get busy, you’ll feel better.”
“If you stop thinking about it all the time, you will get better.”
“There are days I feel just like you but I get out of bed and go to work anyway. Why can’t you do the same?”
“Stop being so negative. No wonder you feel the way you do.”
“You say you’re sick but you went out yesterday. Today you’re acting like you’re dying. I just don’t get it.”
“Maybe something else is wrong with you. Why don’t you go back to the doctor’s?”
“You need to go back on the medication. Looks like you needed it because you’re a mess without it.”
“Remember, you had anxiety before. Maybe it’s just that it’s come back. You need to deal with it and stop hanging out on the Internet with that lot.”
“Are you sure you’re not just depressed?”
“I think it’s all in your head.”
“Pull yourself together.”
So, sadly, rifts in relationships with friends and family, being accused of malingering and indolence, are just some of the issues that withdrawal can bring with it. This is in addition to coping with the most bizarre and cruel symptoms. Only acknowledgement by the medical profession along with general public awareness will change this. Thankfully, more people are becoming involved in this cause and things will eventually change.
In the meantime, understanding that your family and friends' inability to relate is normal, will make you less frustrated and more accepting. Remember, to them this is a phantom illness - an exaggeration or even a figment of your imagination! It is not that they don't care, there is just not sufficient knowledge out there about this problem.
Not all friends and family members are unsupportive. Some have been nothing short of being remarkably loyal and dependable, despite not fully understanding the complexities of withdrawal. If you have one such person in your life, be thankful. There are many who don’t. If you are isolated and without support, I am sorry. Please know that you are not alone. Reach out and you will find people who are willing to help.
The best thing to consider, which I hope will be comforting, is that unlike the person with a chronic life illness, you are going to get better. Everything you are enduring now, is just for a time. There are many health conditions for which there is no cure and a bereaved person will never get that loved one back.
In your case, one day your relatives and friends will see you as you were, or possibly even better than then, and they will realize that you were right all along. You were simply in withdrawal and all you needed was for them to listen to you, believe and trust you, and give you the support you need.
As hurt and frustrated as you may feel now, when this is over, the feeling of surviving withdrawal against insurmountable odds - of overcoming such a cruel, painful and frightening experience - will be much more powerful. You won’t remember a lot of what is happening now and you will be so proud of yourself, it won’t matter who believed you or who did not. You kicked withdrawal’s butt and that makes you as close to invincible as one can get. "
I hope this helps to put your situation into perspective if this is an issue you're having to deal with. Take good care and nurture yourself well. Imagine that you've recovered and someone you care deeply about is now in withdrawal. Then do and say to yourself all the things that you would to that person! In other words, be gentle and kind and Love, Love, Love yourself because you are AMAZING!!!