My Doctor Treats Me Different – Mental Health Stigma

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For the first time since my diagnosis in 1996 I’ve felt that I’ve been treated completely differently because of my mental illness. Perhaps it was because I mostly stable for so long and my few people have ever seen me have an episode, but this came from my doctor.

Since we moved to Tucson 8 months ago I had to get a new PCP (Primary Care Physician), I initially wasn’t sure about her, she seemed a little too friendly, and one of the first things she said was that she wouldn’t write a prescription for diazipam. (I didn’t ask, I’d get that from my ENT anyway), but I gave her a chance. I admit I went in there not expecting much so I felt that’s what I got. The second visit was much better. Every time I’ve seen her she hugged me, until I told her about my mixed mania episode. Now things are different.

I saw her on Friday for back pain. I felt like she dismissed things I said. I tried to talk about the back pain and she asked what I wanted to do about it. I said, “fix it”. “How do you want to do that?” I jokingly said, “I want you to fix it.” and I laughted. She said, “I can’t do that”, in a very abrupt way. She immediately said she would refer me to PT. I tried to say that I wasn’t sure it was muscular, I was concerned it may be arthritis. “No. You need PT”. She normally talks well so I can understand and is friendly, on Friday I had to turn my cochlear implants DOWN because she was so LOUD. She didn’t even want to look at my back, when I said where it was, she said she thought it was my lower back….”well bitch if you had asked you’d know!”, I thought to myself. She touched me and said, “I expected it to be tighter”, in a much lower voice to my husband. I tried to tell her that it feels different, but she dismissed me. I needed to go to PT. Fine, I’ll go to PT and I’ll find a new PCP! (you’d think she thought I was seeking drugs but I’m allergic to opioids, and she knows that, so WTF? I just wanted a discussion and maybe an xray)

I may have made the grave mistake of telling her about my episode, but when my drug list started to change, that would be a pretty obvious clue things were changing. I also mentioned I had back pain as a side effect from akathesia due to a side effect form Latuda 2 years prior, I should not have said that…..WAIT!……………

What am I saying?? I should have been able to say all of that!! My general doctor should be able to be aware of my mental health issues and not start treating me like I’m not able to think for myself.

I will be firing her soon and I will make sure that she and the office know why I am doing so. This is crazy, I’m not!

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Psychogenic Non-Epileptic Seizures – What are they?

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I want to tell you a little about something that is going on with me.  This is very difficult to talk about.  Admitting this is happening to me is difficult.  Talking about it is difficult.  It shouldn’t be this difficult, but it is.

You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy.  It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication.  (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.)   I do not have them regularly, and I haven’t had many, but I do still have them.

“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1

The type of seizures I get are psychogenic non-epileptic seizures (PNES).  By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1  “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1

Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy.  Diagnosis this way is nearly 100% accurate.  There are about 10% of patients with epilepsy who also have PNES.

“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1

As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it.  I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up.  I’m seeing a psychologist for therapy to try to figure out what is causing this.  I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.

Today I wanted to make people aware that psychogenic non-epileptic seizures are real.  People cannot control them.  People often refuse to accept the diagnosis because of the stigma related to it.  Family and often physicians do not understand that the patient cannot control what is happening to them.  I wanted you to know that you know someone who is going through this, and I have no control over it.  I also wanted people to know they are not as rare as you may think,  “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2

for more information please read

  1. Psychogenic (Non-Epileptic) Seizures by University of South Florida College of Medicine
  2. The Truth about Psychogenic Non-Epileptic Seizures 

My Story – Being Bipolar

wendy hairOn this the last day of Mental Health Awareness Month I’ve decided to tell a little about me.  I have a story.  I feel it needs to be told.  If for no one else, this is for me.  (This is the very condensed  PG version.)

Something was wrong.  I didn’t know what it was, but I was wrong.  I was wrong inside.  I didn’t react to things the way other people did.   I knew it.  I could see how other people were different.  I was always told to be myself.  But I just wanted to be like everyone else, I didn’t understand what it meant be  “myself”.  I spent days in tears feeling like I had this black cloud over me.  At a very young age I longed for my life to end.   Other days I was flying high.  I could not control my thoughts from going everywhere, I could not control my actions, I could only follow them.  This wall all considered a natural part of growing up.  I was just a moody child, then a hormonal pre-teen, a troubled teen….  I look back and don’t know how I, or the people closest to me, survived.  There are many stories from this time that are very hard to tell.  They may come out at a different time.

My ups and downs carried on for years, and years, and years…. the older I got the worse it was.  After all when you get older your actions have many more consequences.  However, when the moods were swinging to either end, those consequences simply didn’t exist in my mind.   On the down swings I was fighting for my life, literally.  On the up swings I couldn’t rationalize things.  I couldn’t see beyond the emotions.

After a failed suicide attempt at 25, I finally started getting some mental health treatment.  I was told I suffered from Manic Depression, and was put on Lithium and an antidepressant and started seeing a therapist.  Maybe if I had just been able to stay the course that I was originally put on life would have been different, but things changed.

I was re-diagnosed a number of times.  Things changed so much over the next few years it was a constant battle of up and down trying so hard to get a grasp on reality.  The biggest mistake that was made, I was told that I did not have a mental illness, I had hypoglycemia and the fluctuating blood sugar levels were causing my mood swings. I was so relieved that I didn’t have a mental illness.  I was normal like everyone else.  I simply had to watch my diet and everything would be alright. I believed this for years and tried so hard to control everything with my diet.  If things got out of control, I would beat myself up for not following my diet strictly enough.

People couldn’t see just how bad I was because I was still able to hold down a job, even if I changed jobs frequently, I seemed normal, I was just “moody”.  I went through friends like water.  Friends I made when I was manic, couldn’t stand the depressive side, and friends I made when I was depressed, didn’t understand the up me.  Friends I made when I was in my normal state couldn’t understand my swings and they simply disappeared.

I had a job, but I also had a lot of debt.  I lost days.  There are huge gaps in my memory.  I’ve met people while I was in a normal state and had no recollection of meeting them before.  I didn’t remember men I obviously knew very well.  I did drugs.  I stayed up for days.  Risky behavior?  There were no thoughts of the risk.  Nothing could hurt me.  And if it did, so what?  In both states there was not much thought about my own safety.

Then the day came when the depression took hold so tightly I held a razor to my wrist and started to slice.  I just made the most cursory of cuts, deciding exactly the way I should do this, how deep did I have to go, how much would it hurt, how long would it take….then suddenly I thought….The Mess.  There will be such a mess and my roommate will find it. Someone will have to clean up the mess.  That thought saved my life.  That thought gave me enough pause to call a suicide hotline.  I would not tell them where I lived but I promised to go to the out patient center of the mental health department and talk.  I drove there, and when I got there I talked and told what happened that night.  I could not promise I would not harm myself if I left.  I honestly don’t know if I could have or not, but I knew I needed someone to help me.  I needed to know for sure that I could get through the next day.  I knew if I said I would not be a threat to myself or others then I would not get the help I desperately needed.

Since I was not able to say I would not harm myself I was not allowed to leave, I was told I as going to be admitted to a mental health facility.  I admit I actually felt a relief.  I suddenly felt safe, at least for the night.

The police came and took me to the hospital.  I was entered as a non-voluntary admission.  That is the only way my insurance would pay for this, but I had insurance now, this was what got me into this facility instead of the state hospital.  I had no idea the amount of debt I was about to get into.  I needed help, that is all I thought about.  I no longer cared what people thought of me, I no longer cared if this would follow me forever, I only wanted to lie down and never wake up.  I knew these thoughts had to stop, I knew if something didn’t change I would end my life, soon.

(If you would like to know more about my stay in the mental hospital please see my post: Inequality in the Mental Health System.)  The stay in the mental hospital changed my life forever.  I was there longer than I thought I would be.  The little overnight stay turned into two weeks,  but when I left I was in the mental health care system.  I had group sessions set up, I had an appointment with a new psychiatrist and therapist.  I had a new lease on life.  With another wrong diagnosis, Borderline Personality Disorder.

Soon after starting to see my new psychiatrist it was then determined that I do indeed have Bipolar I disorder.  I started being treated with Lithium and other medications again and things finally started to get on track.

It took some time to get the medication just right.  It took a lot of time in therapy.  It takes a lot of work to get things right and get better.  It takes a lot of work to keep struggling through the system.  It takes a lot of work to help yourself when there doesn’t seem to be an out.

I’m a lucky one.  I was able to find help.  I was able to get a correct diagnosis.  I was able to get a treatment plant that worked.  I’m still able to get the help I need, when I need it.  So may people are not as lucky as I am.

There are many obstacles in getting mental health care.  I fought hard to get where I am today.  I still fight hard to ensure my mental health is a priority.  I will never give up.

Too many people are fighting for mental health care and have so many obstacles in their way.  If you are one of these people, please don’t give up.  Reach out. In my experience, things don’t always go smoothly, but getting help meant my life is so much better than my life was before.

National Suicide Prevention Hotline    If you are in crisis please call.  1-800-273-TALK (8255)

American Foundation for Suicide Prevention

Mental Health Alliance (This site has a lot of useful information, including help getting care without health insurance.)
National Institute of Mental Health
Seeking Mental Health Care: Taking the First, Scary Step (this is a very useful article from Psych Central)

Mental Health Care Awareness Month is closing, but we should always be aware and working to obtain equal and affordable mental health care for everyone without stigma.

 

 

If it’s wrong, then it’s wrong

May is National Mental Health Awareness Month.  This year the National Alliance of Mental Illness (NAMI) is asking everyone to take the pledge to stop the stigma surrounding Mental Illness.  You can do that officially here: Stigma Free. (#stigmafree)

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I think the stigma around mental illness has gotten better over the years, but there is a long way to go.  I saw this great article talking about phrases you shouldn’t say, I think it’s worth the check out.  9 Phrases You Shouldn’t Say During Mental Health Awareness Month.

Here, I want to talk about how differently we treat and think about people with mental illness compared to other illnesses.  For example cancer.  Why cancer?  Because you’d never make fun of someone who has it, you’d never blame them for having it, if the treatment doesn’t work you’d never say they aren’t doing enough, and you’d treat them with respect and compassion.   It is wrong to treat a person with a mental illness differently than you would treat a person with cancer.

A few facts you may not know.

Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year. (Oct. 23, 2015)  – See more at:on the NAMI site.  Learn More Mental Health by the Numbers. 

 

Think about that, when you meet 5 people, chances are one of them has a diagnosable mental illness.  That’s huge!

There are many reasons someone may not get help, one of them is the stigma behind mental illness.  Because of the stigma, they are afraid of how people may react, they are afraid they may lose their jobs, respect from others….   This barrier for treatment has to stop.  People cannot feel embarrassed to go for help.  They cannot be made to feel they need to tough it out, to pull themselves together, to stop being so dramatic…..  We need to acknowledge when someone is having difficulty and let them know you support them.  We must also realize that, just like people with cancer, people with a mental illness may not realize it, they may be afraid of the diagnosis, they may not want to face it…  If we noticed someone we care about feeling or looking sick a lot we would encourage them to see a doctor.   We need to do the same when we see someone who we care about struggling with mental illness.  We need to let everyone know they are cared about and supported.

There are many reasons why people do not get help that have nothing to do with not wanting it or searching for it.  Often people  do not get the care they need because they simply can’t get it.  They don’t have insurance.  They can’t afford it, even with their insurance.  (there are a lot of barriers within the insurance system that keep people from having access to health care, I could write a whole post on just this crisis).  We often think there are public places people can go, “the mental health system will help”.  This is far from true.  There are a lot of hoops one has to go through to get be seen by someone in the system.  Often someone with a mental health issue gets way too overwhelmed to be able to do all of this.  Even when someone is in dire need of help they often have to wait months to see a professional through the mental health system.  Unless a person is “a threat to themselves or others”, it is almost impossible to get in to the mental health system in a timely manner.

These barriers are signs of stigma within the system.  Many people need and want help, but can’t get it because of the barriers.  We have to break down these barriers.  We must break down the stigma that people with mental health deserve less then people who have any other type of illness.

Please take the time to take the pledge to stay Stigma Free.

Read more about Mental Health Awareness Month and find more ways to contribute through the National Alliance on Mental Illness (NAMI).