Shedding The Weight Of Words
I wore a very heavy cloak for a long time. It got in the way of everything that I did. I tripped on it. I fell on my face. My momentum got so tangled up in it that often I was stuck in the same place for days. Some days it felt like there were extra weights sewn into the lining.
This mantle was forced on me by the psychiatric community who wanted me fixed and dependent on them. They, the minions of the industry – psychiatrists, psych ward staff, nurses and administration of residential communities, social workers, NAMI – all added layers so carefully that I rarely noticed until I tried to walk away.
Out the double doors with the chicken-wire embedded in the windows, through the ante-room to collect my bag, and by the time I pressed the button for the elevator, I could hardly breath.
The cloak, the unbearable weight of language – all the labels and symptoms, each syllable a ton.
The “professionals” reassured me that they would lift the hem and get me going again. With promises like “affordable extended care” and “trained professionals on staff” I could glimpse out into THEIR future.
We plodded along. My daughter was lost in the system and we, her family, felt our shoulders slumping under the burden of her “mental illness”. How to help her? Who to listen to? The advice of the professionals was like dead weight handicaps. Her life was seeping away right in front of us and we felt powerless.
Words can be too heavy. I am often asked by facebook friends if I am a member of NAMI or WRAP or any of the other organizations which, I think, keep the idea of “mental illness” alive with clever wording which, at first, makes them sound sympathetic and understanding until you analyze their mission: to keep feeding the system. Keep the people “patients” and the families scared.
This system kept my daughter hopeless and her family weighted down by the burden of “mental illness”.
The relief at dropping the cloak of “disease” has been enormous.
Like I have written before, I can now see into MY DAUGHTER’S future. From my point of view, my daughter was given back her life when we both shed the system.
I only wish it could be as easy for my daughter as it has been for me. The burden of proof of her well-being is constantly questioned. “But, your records say…”
For the rest of the family, we have always been able to close the door, walk away, take a breather. Not so for my daughter. And, even though she is SO much better and not the person who was sucked into the psychiatric system, she is burdened with the labels in all her medical records. She is an object of curiosity. The troubled girl. The child of that weighted down couple…
“She is better !” I want to take an ad out in the paper. I want to rewrite the history. I wish I had refused the cloak and hadn’t spent years trying so hard to stand upright. But, it happened and now we need to move on.
Actions speak louder than words. With time, my positive attitude and advocacy for reform in the mental healthcare will budge the hand offering the cloak out of the way.
With time, my daughter will show how she has managed to create a life despite her history.
I’ve been there, too, and it’s not a place that I want to go back to. My solution is like yours, emphasize the positive.
I am 52 and in recovery most of the time now. I have used both the psych and alternate systems to reach where I am. I have learned to use nutritional supplements and vitamins/hormones/minerals to balance my symptoms and wean off psych meds. I have a high quality of life, i am independent and mostly I am well.
However if not for the psych system that invested so heavily in me, and recognised the potential behind the non verbal, clinically depressed and dying woman i was 12 years ago, I would not have survived long enough to learn how to thrive.
I now access what I need from whatever “system” delivers the right product or service. It was the psych system that delivered 8 years of intensive one to one psychotherapy that allowed me to grow at a rate that was sustainable and permanent.
That for me is the key. I recognise I am high maintenance. I allow for changes in symptoms and adjust accordingly. My family and friends are solid support that flex when required during stormy times. All the success in my life comes down to what was long term, dependable and resiliant in myself,others and treatment.
I too have no intention of going backwards, however I keep the option of trying new ideas/treatments open. I wish you well and send thoughts of positivity and encouragement. We share a dx not a diabilty/death sentence. We ahve so much to teach others about persistence and courage.
Hi Coral,
You are very lucky to have a supportive psych team that recognizes alternative approaches as being just as useful as the traditional medical model. People like my daughter who have been burned by the psychiatric community are wary of seeking help there and need to rely on self-determination to get them through.
Some days my daughter feels like all the labels are disability/death sentences. Other days, she is raring to go. I am hoping that working with a nutritionist will get her stable enough to have more good days than bad. She has been down so many roads seeking help; hopefully this one will lead to some real relief.
xx kris
So, Kris am I understand right that your daughter is no longer on meds or in therapy?
Hi Rose,
Yes, my daughter has been off the heavy drug load which she had been put on at Austen Riggs (and for years before that!). It has been eighteen months. The only drugs which she continues to have to take are the benzodiazepines. They are nearly impossible to get off. She no longer reaps any benefits from taking them – no lessening of anxiety. Now, she HAS to take them to ward off withdrawal. I can see when she has gone too long. Her face drops into a flatness that I cannot describe and her body gets tense and she looks like even moving her head is painful. The anxiety is more than what she experienced when she was first prescribed them.
There are lingering withdrawal effects from years on psych meds that are very hard to deal with. Insomnia is at the top of the list right now. Also, she just had surgery on her foot and the narcotics that they gave her had no effect on the pain. Probably because her brain chemistry was so altered BY the psych meds. She was in howling, miserable pain and there was nothing that anyone could do.
While she has been home, I have been feeding her regularly. I give her fish oil and vit D. When she goes back to New York after she has healed, she will visit a nutritionist who purportedly is very good a helping people get off of benzos. We’ll see.
My husband and I are astounded at the change in her. She still has mood swings, sees things very black and white, works at splitting and has a relationship with her body and self-image that is troubling. The dark clouds come but don’t last as long.
She is so much better than when she was drugged with psych meds. Her sense of humor and clear thinking is back. She is brilliant and softer somehow.
I am having joyful moments with her that I didn’t expect to have except in fleeting unexpected instances.
As to the question of therapy. My daughter was very burned by the psychiatric industry and for her that includes therapy in every form. She has done it ALL and does not want to revisit that realm – at least for right now.
Although I am anti-psychiatry, I am not entirely anti-psychology. I believe that there are some cases where a compassionate listener can really help someone in need. I used the New York Times article and the woman and her son as an example. The normal stresses of life are medicated away in the current system. This woman and her son might have been telling a very different story today if, when she sought help, she had been funneled into federally funded/ state funded programs (that relieve stress) – childcare, job training, counseling – rather than directly to the medicine shelf. (My guess is that she wasn’t paying for the meds her son was put on. Could the money spent on the drugs have been used differently.)
Being presented choices is the key to my mission. There are, like you, many people who have benefitted from drug therapy, but I would like to see alternatives present when the first sign of mental health issues begins to interfere with daily life. Too often the only course of treatment is a prescription for a drug. After the brain has been altered by the chemicals in the drugs, options might be offered but I feel it is too late at that point. The medications have by then had a chance to strip the individual of inspiration and motivation. I know that I saw this with my daughter. Anti-depressants and mood stabilizers were the first to deprive her of her drive to make art. When the rest of the arsenal was added, she quit reading (a life long passion) and rarely had the presence of mind to sit still in a movie theater.
Maybe if my daughter had been taught relaxation techniques early on… Maybe if she had been prescribed an exercise routine as they are doing in England (doctors are writing prescriptions for gym memberships) when she quit team sports as a teen… Maybe if she had met with a nutritionist who did a full work up and discovered the minerals that were depleted…
Maybe things wouldn’t have gotten so bad if these options had been present when my daughter first sought help. We will never know. But, I do know that I would like to change the course of another person’s life by telling the story that my daughter when through at the hands of the psychiatric industry.