My Theory Is This

Why is it so important to me that people understand the depth and breadth of the impact of mental illness?

Shame and stigma inevitably follow closely on the heels of a diagnosis of mental illness. They just do. According to everything I have read and everyone with whom I have spoken about their mental illness, it is fair to say that people suffering from mental illness feel shame and a stigma. These symptoms are simply strong companions to this illness. I’ve never had a sexually transmitted disease (STD), but I have often wondered if people with an STD are burdened by the weight of the same embarrassing boulder that mental illness sufferers lug around with them. Now isn’t that a concept – comparing an STD to a mental illness?

I believe that I understand why the shame and stigma are so intertwined with a mental health diagnosis. As I have written previously, mental illness is an invisible illness. People cannot reach out and touch any part of it. They cannot see a wound heeling. The chemical imbalance experienced by mental health sufferers effects the brain and the emotions. It’s not seeable. It’s not touchable. Without any concrete disease to identify, non-sufferers have to trust and accept verbal descriptions that likely do not make sense to them. What do you mean that you feel fear in the pit of your stomach? What does that feel like? What do you mean that you have shivers all over your body? What does that feel like? What do you mean that you are too scared to go outside? What does that feel like? What do you mean that you feel nauseous? Does that feel like the flu? What do you mean that you cannot concentrate even sufficiently to read a magazine? What do you mean that you are so sad that it hurts like hell? Can’t you see that there is so much good in your life? None of this is understandable to people outside the “club,” and there are times that it doesn’t make sense even to people inside the “club” either.

When asked about breast cancer, or thyroid illness, or diabetes, or high blood pressure, or acid reflux, people just start chattering away about their aches and pains and the medications that they take to help treat their symptoms. But ask someone about their mental illness (if anyone even dares to raise the subject) and the crowd goes quiet.

So, my theory is this. If the crowds could understand the depth and breadth of the impact of mental illness, mental health sufferers would not be sufferers. They would be able to come out of the closet, and be free to feel comfortable with owning their particular piece of baggage. They could feel more comfortable seeking out help, both medicinal and psychological, that they need to rebalance their systems. Then they would be able to live the best life possible as happy and productive human beings.

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An Invisible Dragon

Friends and family often want to help when someone is sick. They offer to bring meals over, help with laundry, do errands, and spend time visiting. A mental illness can be just as debilitating as any other health problem, but people don’t generally make those kinds of helpful offers to those suffering the pain of depression or anxiety disorder. People look for the visible signs of illness, and for those managing a mental illness, there are no visible bumps or bruises, just a lurking demon – an invisible dragon. The invisible dragon causes many invisible bumps and bruises that provide just as much pain as one would suffer with surgery. But keep in mind that the pain is invisible to others, so few see the need for reaching out to help.

One day during the third year of my period of denial, an incident occurred where well-meaning people suggested that I was not doing enough to help myself, that I was stuck in place, wallowing in self-pity, and allowing myself to become a victim. (that issue of victimization seemed to rear its ugly head a lot – as if I wanted to feel lousy and chose this illness) At the time, what I heard them say to me was that there was really nothing wrong with me except that I was feeling sorry for myself. Today, 16 years after the incident, I now appreciate that they were telling me to get off my butt and do whatever I needed to do to get unstuck. However, I believe that they did not understand the disease with which I was wrestling, and I desperately wanted them to understand all of its facets. But the bottom line was that they were giving me the right advice even if they did not understand the impact of the disease.

It was really important to me that these people understand. I wanted them to know how hard I was working towards getting better. I wanted them to know that my pain level reached a ten many days. I wanted them to know that I had to talk myself through each day acting as my own cheerleader. I wanted them to know that the uncertainty of each day was scary. I wanted them to know that the pain got so bad on a few occasions that I just wanted to close my eyes and say goodbye. There was so much I wanted them to understand. I was really hurt and angry that day (there were invisible flames coming out of my ears). For a short period of time as we sat together, I tried to explain to them through tears of frustration just how hard I was trying to get well, and how hard it is to fight an invisible dragon. I believed at the time that they did not hear me. I believe still, that they do not understand the depth and breadth, the pain and anguish, or the loneliness of a mental health illness. What I know is that I decided to stop trying to convince them of anything because I thought it was wasted verbiage. It left me frustrated. It left me sad. If left me thinking about the issue of shame and stigma for 16 years.

And Not A Moment Sooner

The day I hit bottom, or at least what felt like bottom to me, was the day my denial ended. It was the first day the stigma no longer mattered to me. Failure was no longer represented by taking medication, but instead meant not taking medication and remaining stuck in this place of unhappiness and fear. The day started with my feeling awful – depressed, anxious, upset, frustrated – and it kept getting worse throughout the morning. Sometime during the late morning, I had a defining moment when I knew that I did not want to live the rest of my life on this roller coaster of uncertainty that accompanied each day. I knew, at that moment, that I wanted to live the best life that I could, and I knew that I was not even close to that kind of life as I sat there thinking about my options.

First, I called my husband at work and told him how bad I was feeling, and that I had decided that I was ready to do whatever it took to get back on track to a happy and healthy future. Because I believed that the best place to start in the right direction was with my therapist, I asked my husband if he would meet me at the therapist’s office if the therapist had time to see me that day. My husband said yes, and asked if I could drive myself there or if I needed him to come get me. Somehow, I knew I could drive. I called the doctor, and one hour later my husband and I were sitting in his office. It did not take long for me to explain how miserable I felt, and how ready I was to do whatever it took to feel better. I was done with denial, and ready to move forward. He asked if I was ready to take some medication, and I said yes. He then called the psychiatrist who is associated with the same office, and an appointment for me was set up for the next day.

I was very lucky that it all came together so quickly. Fortunately, the first medication prescribed worked immediately for me. Of course, I had to let the medication work its way into my system, but it did so without any bumps other than progressively delivering every anticipated side effect. Luckily, each one lasted about 24 hours. Remember, I remarked that this all happened quickly? But putting it in a time perspective, it took roughly three years for quickly to happen.

After the prescribed six weeks of letting the medicine build up in my system, I noticed a marked improvement in my mood. Things that I had understood intellectually after months of talking with the therapist (before taking the medication) were now beginning to become part of my internal tape, and I could actually begin to “walk the walk.” I felt more comfortable in my own body and more secure that a full and rich future lay ahead. I was now receiving the chemical/mental support to enable me to continue working with my therapist and peel away the remaining layers of the onion. The verbiage we (the therapist and I) had exchanged over the past three years became more than just words. I was now able to translate the verbiage into actions. I also noticed that the medicine continued to build for an entire year before appearing to level out. With each passing week, I could feel additional strength of spirit and purpose.

Everyone has to take his or her own path. No one walks that path with you. A person can get a ton of advice and support from friends and professionals, but in the end, we each walk our path alone, and make our choices alone. The most important point to remember, based on my experience, is that we can only make those choices when we are ready, and not a moment sooner.

Denial

The task of mental health healing is really tough work. There is no place for the faint of heart. There is no room for doubt or ambivalence when you decide to take on the work of healing.  And you must reject the stigma that is so often attached to mental health issues.  If you truly want to get better, you must feel that desire in the very core of your soul, and know that you will do whatever it takes to reach the goal of well-being. I believe that the key to any successful mental health healing process is to own the problem.  Owning the mental health disorder is more than half the battle. Unfortunately, we often say that we want to get better, but sometimes we keep ourselves from getting better by decisions we make and actions we do or do not take.  If you live in the land of denial, as I did for so long, nothing moves forward.  Nothing can be improved.  What I learned was that there is a big difference between saying that I wanted to get better, and feeling/knowing that I wanted to get better.

Denial!  Such a huge word.  No, I don’t have high blood pressure.  No, I don’t have an eating disorder.  No, I don’t have an anxiety disorder.  No, I don’t have blurry vision.  No, I don’t have a hearing problem.  No, I’m not depressed.  No, I don’t have mood swings.  No, I don’t need anger management.  Denial!  Such a negative environment in which to be stuck.

Support Systems

Fortunately, when I battled my first anxiety episode, I had a small group of close friends and some family that surrounded me, cheering me on.   My biggest cheerleader was my husband.  He started taking over some of my chores at home, and supported my choice to try the alternative medical routes, even though we did not see too many positive results.  He was always there with a strong hug when I needed comforting, a shoulder when I was crying,  an ear when I needed to talk, and always always there to help push me forward.  Most importantly, he was very patient. Three years is a long time to be patient.

About the same time, I left my job, which left me with little to fill my days or occupy my mind other than going from doctor to doctor trying to find a solution to my situation.(remember that I had not fully accepted my plight, and was running around trying to find something that would work within the boundaries of my denial.)  That was not a great place to be.

One very dear friend accompanied me every morning on a walk.  Well, the truth is she came to take me on a walk.  The walks were very helpful,  offering pleasant conversation in a peaceful nearby park, and filling some part of each day.   Then one day at the end of our walk,  I just started to cry.  “What do I do now?”  I asked.    Besides hugging me tightly,  her tears mixing with mine, she grabbed at the first thing she could think of.  She was on her way to volunteer in our synagogue gift shop and suggested that I tag along.  It took about two seconds for me to agree to try that, and it was a miracle how much that little suggestion meant to my future well-being.  I ended up becoming a volunteer at the gift shop. It proved to be a safe place to go each day, and provided simple things to occupy my mind.  It was truly a great environment in which to begin to heal, and I am ever so grateful for the huge part this activity played in my healing process.  I have since remained quite involved in this volunteer activity.

I began to volunteer at other institutions, including our local arboretum and our neighborhood elementary school.  Thinking beyond my own problems was so very helpful in many ways.  I began to  put a life back together and help others at the same time.

There were a number of friends who kept in touch, though not a lot of people knew what was going on in my life.  But It is important to me to acknowledge two very dear friends who were part of my core group of cheerleaders.  One called several times a day,  offering her ears to listen and her love for support. Still another friend simply invited me to join her in everyday activities.  Sometimes that meant sitting in her kitchen and arranging flowers. Sometimes it meant helping with a sewing project.  It never mattered what the task was.  What mattered was the companionship and a safe environment.

I write about these supports because they were so important to me during this difficult period, and I believe this kind of support would be important for anyone going through such a major crisis.

Full Disclosure

I decided it was time to just let you all know, before I continue to explore the stigma that accompanies mental health diseases, that it is many years past my first experience with an anxiety episode, and I am doing quite well.  Almost twenty to be exact.  After getting myself on the right track (with the help of professionals and friends), I had 16 years symptom free, handling many difficult situations without so much as a blip. (In the interest of full disclosure, during this time period I was taking an anti-anxiety drug every day, and it was working.)  Then I ran headlong into a speed bump, which caused a second episode of the anxiety to rear its head.  I was absolutely shocked to be going through the same drill all over again.  However, I knew where to go for help, and did so quickly.  The necessary work to get strong again is still hard, and I have been working hard to get through this blip as fast as possible,  and I am working on getting stronger every day.  NO – I am stronger every day.  One unexpected issue that has resulted from this go-round is the recalibration of the correct dosage of medicine that will work for me at this point in my life, the need for which initially upset me.  I looked at this situation as though the failure of my original dosage to no longer work reflected negatively on me.  But I came to understand that my medicine is no different than other medicines given for any number of chronic issues.  Those medicines have to be recalibrated quite often.  I got 16 years out of mine.  That’s a pretty good stat.

The stigma that I felt about my disorder kept me from trying good old fashioned western medication for three years.  I get a little annoyed now when I realize how much time I used up being stubborn and scared of stigma.  I am more comfortable with the words “anxiety disorder” and “mental health issues,” and I have come to accept this disorder in part as a chemical imbalance that causes an anxiety disorder, and I need meds to help me, just like a diabetic needs insulin or someone with high cholesterol needs a statin.  I am not a crazy lady.  In fact, I am quite the opposite.  I am happy with my life and all it brings to my table.

One thing that I have come to understand is that overcoming an anxiety disorder is a lifetime commitment.  I am doing well now, and I do not want to take that for granted.  It is constant work, each and every day.  Each day I say a prayer that I am well today, that I am strong today, that I am productive today, and that there are medications that can help me today.  I am grateful for every day that my prayer is answered.

What did they know?

A person close to me told me I was allowing myself to become a victim?  That there was really nothing wrong with me that could not be fixed by just moving on, and that I was being overly dramatic.  The comments made me really angry.  What did he know? How did he know what it was like to be in this miserable state?  How did anyone know, who had not been here,  what it was like to live with anxiety day in and day out and feel totally out of control?

I thought I was trying everything I could think of to “get better.”  However, the comments coming to me reinforced my perception of shame and stigma that I associated with this “illness.”  I knew if I had told people that I had breast cancer their reactions would have been quite different.  But an anxiety disorder?  In my mind, they were saying, “Hey, that’s just bullshit.”  What did they know?

There was no way to explain to people what the pain felt like.  It was not the pain of having a broken arm, burned skin,  surgical stitches, any of which people could readily understand and relate.  But it was real pain.  For me, it started with debilitating back pains, for which I could find no relief.  Then came nausea, fatigue, and it continued with the worse pain of fear, paralyzing immobility, constant tears out of nowhere, the shakes, nervous tension, loss of appetite, extreme weight loss (there is an upside to everything), and inability to concentrate.  It was such an intangible set of conditions.  Then there was the pain of not understanding the cause.  Why me?  Why now?  And of course, the pain of not understanding that there was a road to health.  A road at the end of which there would be, once again, strength and happiness.

No Shame At All.

A friend told me that there is no shame – “no shame at all,”  she said.  But that isn’t even close to how I felt.  My shame was very strong.  I wanted to hide away, and not tell anyone what was going on for fear of their reactions.  (But almost anyone who cared to know could tell that something was wrong with me with just one look at my empty eyes and my drooping posture.) My husband made me continue to live life, but I really just wanted to stand rigid in one spot,  close my eyes tight,  and not move again until my anxiety was all gone. Plan A did not work out too well.

Instead, I went to talk therapy, which of course began to peel away the layers of the onion (as I like to say), and every alternative therapy I could find.   Acupuncture, homeopathy, meditation, and visits to a gynecologist ( yes – gynecologist, because this of course was probably just menopausal issues) became my routine.  I would not even consider western mental health medication., because to me, that would have been a failure on my part, and an acknowledgement that I really did have a mental illness. I rationalized that if I did not need medication, then I could not have a mental illness., and if I took medication,  then I would in fact truly be sick.   What would people think? What would people say? The stigma.  The embarrassment.  The ever present shame.

The Shame of it all.

The shame of it all.  I was forty seven years old, and I was falling apart.  A strong, capable, successful person,  multi-task oriented woman, proud of being able to “do it all.”  All of a sudden, I was no longer able to cope with the balancing act of life.  This new state of being did not make any sense to me at all.   I don’t remember how I began the journey back to happiness.  I just remember that i was sitting in my therapist’s office crying that I was so tired.  I was tired of not smiling.  I was tired of not being able to care for my kids.  I was tired of not being able to cook dinner.  I was tired of working so hard to figure it all out.  I was tired of the hopeless feeling.  I was tired of not understanding what was going on.  I was tired of blaming it on one thing one week, and another reason the next week.  I was tired of wanting to crawl into a cave.  I was tired of the embarrassment.  I was tired.