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Thursday, February 25, 2016

The Stigma Still Exists

Unfortunately, we still live in a world where the stigma still exists for people with mental illness.  It's not as bad as it used to be as I look back when I started my journey, but we're not to the point of celebration yet either.  We need to use wisdom and discernment with who we tell our diagnoses and what medications we are taking.  I've had unfortunate incidents with this.  And they were painful.

Back around 2005 I had come down with something unexplainable.  All of my joints ached.  I couldn't get around very fast like I usually could.  I was slowing down until one morning I couldn't get anywhere--out of bed--without great difficulty.  I had never experienced it before.  What I didn't know I had at the time was ehrlichiosis from a tick bite.  I had never even heard of it.  My husband was in the Army Reserves at the time and was on his annual field training with his unit hundreds of miles away.  The only way he could be reached was through the Red Cross for emergencies.
I was in excruciating pain and knew I couldn't drive myself to the hospital.  And my mother who was working could not carry me out of the house.  So I had to call for an ambulance to come get me.   My mother came and took my daughter with her.  On the trip to the hospital in a rival hospital's ambulance (which I don't think would have made a difference) I heard the paramedics talking about me.  They treated my condition very casually.  I heard one tell the others that I probably just wanted a ride to the hospital.  I was so angry and couldn't believe what I was hearing.  I don't know whether they thought I was too out of it or they just didn't care that I heard them make such an insensitive remark.  I don't remember, but I'm pretty sure that they asked what medications I was on.  They usually ask that so they can tell the nurses/doctors when they arrive at the ER.

When I got to the ER the nurses and doctor came in as usual but it took a while for anyone to come see me.  By that time, my sister was there, as well.  I was in so much pain and laid for hours on a gurney in a dimly-lit room.  They ran blood tests (just not the right one, in my case).  The doctor came back to me and said he could find nothing wrong with me and said he was going to send me home.  I didn't know WHAT I had, but I knew it was serious enough that I needed to stay there.  He told my sister and mother that it was all in my head.  Wow, does he say that to everyone who feels terrible.  No, I doubt it.  But I was on psychotropic medications.  I can't help but feel sarcastic about it because I had come face to face with ignorance and insensitivity and from a doctor, at thatSo, I told the doctor since he didn't know what was wrong with me and the pain I was experiencing was SO great that I was going to stay in the hospital until they found out what it was. 
After being taken to my hospital room, I soon discovered the nurse assigned to me decided she was going to let me do my own urination measuring in one of the cups that sits in a toilet to measure how much a person urinates.  I had to tell her how much it was and wash it down myself.  Nurses are supposed to do this for you.  Now, I cannot tell you for sure that she acted this way because she knew what medications I was on or whether she was being lazy or maybe she didn't like her job.  I felt her looming doubt about why I was there whenever she came in to attend to me.  It was like that until the very end.

The doctors (resident doctors) were doing all this testing on me.  They even performed a spinal tap on me one evening to test my spinal fluid.  Nothing came back positive.  Until, the resident docs came in and told me the last test they ran was for ehrlichiosis and it came back positive.  Like I said earlier, I had never heard of it.  I knew about how dangerous it was to get Lyme Disease, but not this.  I also learned that this illness had worsened so much--that if it got much worse it could have caused death if untreated.  That's why I was in so much pain and could hardly move.  When I left the hospital, I felt vindicated that "it wasn't in my head."  What if I had gone home when the doctor said it was in head, gotten worse and almost died.  I wrote a long letter explaining all my experiences starting with the paramedics to the guest services rep for the hospital.

Mental illness stigma is very real and I had just experienced it.  Don't let it keep you from getting the care you need.  If you know something is not right with your body--keep fighting.  We are supposed to 'listen' to our bodies--be sensitive to and listen to our intuition if something doesn't feel right.  Don't ignore for fear no one will believe you or be treated as I did like a 'head case'.  I am not ignorant to the fact that there are mental health patients who are either NOT under a doctor's care or not on a regular basis as they should be.  And at times, these patients can act irrational.  And maybe that's the training health professionals get on how they treat mental health patients--for this very small percentage of people.  I really don't know.  And I know the way I was treated is NOT the same everywhere.  But there are too many mental health patients who don't seek healthcare out of shame, embarrassment, and harrassment.  Let's try to make their lives a little easier by giving them the benefit of the doubt as everyone should.  Stop the stigma--stand by your family members who suffer, friends or coworkers or yourself.  Stand in the gap.