How Stigma Compromises My Medical Care

I don’t know what to do.

I can bet that most of you will say, “Just be yourself, Laura.  Fuck ’em if they can’t relate to you as the awesome human being you are.”

Well, yeah.  I appreciate that.

However.

I have this service dog, see, and she’s neither little nor cute.  Well, she’s cute to me, but a 75 pound Belgian Malinois is automatically not cute to most people, especially the uptight assholes that tend to go into “the medical field” these days.  Even my therapist does not think she’s cute.  Even when Atina climbed into her lap and gave her kisses, because she could see that the dear lady was clearly in distress, it did not help.  My poor therapist could do nothing except beg me to get the monster off of her, which I did, and Atina reluctantly obeyed but was still of the opinion that the lady needed her attention.

On the flip side, if Atina perceives that someone is potentially a threat to me, she stations herself sideways in front of me, giving the unsafe party the hard-eye, which is dog language for “come over here and make my day.”

This is why I have a Service Dog:

I have a perfect storm of Asperger Syndrome, PTSD, and Bipolar illness.  My judgement about people is shot to hell.  I lost it on April 22, 1970, the very first Earth Day, when I was drugged, dragged into a dark basement, and brutally robbed of my virginity.  That, and the prolonged months and years of running from one frying pan into another fire, robbed me of my ability to read people’s intentions.  I think it’s because I simply dissociate every time I have to interact with other people.  So now that I’m on the far side of sixty and no longer give a shit, I’ve stopped making myself do painful things, and aside from the inconveniences of not having friends, family, or a partner when I have a medical emergency, I feel much better.

Have you noticed that sometimes your fridge, washing machine, microwave, computer, and automobile all crash at the same time?  So now you have to get a ride to the Big Box store, to the bank to get quarters for the laundromat, and a ride back and forth to the laundromat, to the convenience store for ice until the new fridge comes, and while you’re on the phone with Tech Support your phone is giving your ear a second degree burn and probably giving you brain cancer as well….

This is what I call a Wear Cycle.  When everything wears out at once.  It generally falls out when you’re between jobs, or just before those gift-giving occasions, or your wedding.

So as some of you are aware, I am in the throes of a Wear Cycle of the most annoying sort.  My body is falling apart.  I thought it just needed a tune-up and maybe a brake job, but it turns out to be the transmission, the universal joints, the head gasket; and every time they fix one thing, another one turns up bad.

The result is a seemingly endless procession of doctors, PAs, Nurse Practitioners, lab techs, snotty Front Office People, sadistic MRI techs who put me in Positions Of Stress for upwards of twenty minutes while further damaging my hearing with the various hammerings and clangings of that infernal magnetic tube, being told that I need surgery for this, surgery for that, and they all worry about my blood pressure.  Surely not!

You must understand that my relationship with The Medical Field is a mine field.  The minute I leave my van in the parking lot of the doctors’ building, the hospital, the lab, I dissociate.  I am terrified.

But you’re a doctor, you say.  How could you not be comfortable in this oh-so-familiar milieu?

That’s just it.  I’m all too familiar with it.  I know exactly what goes on behind the scenes, and it disgusted me while I was in it, and it terrifies me now.

Because I am…one of those patients.

You know, the aging female with so many complaints it throws your schedule off, and she’s slight dotty, and might be amusing if you weren’t running so far behind, and of course–of course, she has to be a doctor, at least she says she is, and she does know the lingo…and she has Medicare and doesn’t seem to have a job, so she must be disabled, but for what?  She’s not saying, and if you ask, she’ll say something vague.

I know this, because I’ve been on their side of the white coat.

So imagine what the reaction would be if they walked into the exam room and there I was with my Service Wolf Dog.

The entire visit would revolve around whether the person who Works In The Medical Field was comfortable with the Doggess, and whether she thought they were Safe.

And of course she would pick up on my instant dissociation because I dissociate whenever I run into One Of Those People, because of the abuse I suffered when I was working In The Medical Field, and the abuse I have suffered as a patient dependent upon these people’s power.

And the shame of being disabled, which is, according to the ancient tenets of The Medical Field, weak; and even worse, crazy.

I just rediscovered a former mentor who was hugely influential to me when I was a medical student.  She was my supervisor in the Public Health Clinic.  We became good friends, and she helped me crystallize my medical practice world view, which is based on compassion and empowerment of the patient to take charge of her own health and well-being.

It turns out that this amazing woman had a terrible crisis, which lead to a suicide attempt.

Rather than supporting her and helping her to rebuild her life, the medical establishment brought criminal charges against her for lowering the esteem of the medical profession in the eyes of the public.

They drove her out of the profession.  It didn’t matter to them that this heinous act might push her over that very precipice she had dragged herself back from.

It didn’t matter that they were persecuting one of the finest physicians on the face of the earth, for the crime of being human.

All that mattered was that she had “failed” to complete her suicide.  If she had died, she would have been another tragic physician suicide; but since she managed to survive, she was pronounced a disgrace to the profession.

Fortunately she is a strong and resourceful woman.  She cleaned houses in order to feed her children.  She struggled her way back onto her feet, and reinvented herself.  Blessed be.

So I know very well what the result would be, even if the Doggess didn’t bite the Assistant (you hardly ever get to see The Doctor anymore):  “Did you get a load of that lady with the dog?  What a crock!”

Yes, fuck ’em.  They’ve no right, legally or otherwise, to prevent me from having my dog with me.  She’s Durable Medical Equipment, just like a wheelchair.

The only thing is…being mentally ill automatically discredits anything I say.  I’ve tried it both ways.  And unfortunately, whenever I’m honest and disclose that I have DSM diagnoses, I get my case dismissed.  No contest.  No service.  Goodbye, and put some ice on that.  It will feel better in seven to ten days.  No need for follow-up.

In awful contrast, when I have withheld my diagnoses, it’s all sympathy and MRIs.

Hell, I even got a few tramadol tablets for my torn shoulder, when I begged the doctor because my left wrist is in a brace awaiting surgery and my right shoulder is so painful that I can’t even get out of bed without fainting if I forget and try to push myself up with my right arm.  (How do I get out of bed?  By wriggling on my tummy until my feet touch the floor.)

You think she would have given me that prescription for thirty, no refills, if she knew that I’m bipolar?

Nope.  Bipolar people are categorically drug seekers.  Even though I asked for tramadol and not Percocet.  Drug seeker, no way.

I’m stuck.

I’m terrified of those places, and I need my dog.  But the presence of my dog would set off such alarms in the mind of The Medical Field Person that my actual medical issues would be eclipsed by Prejudice.  Stigma.

If I showed up in an electric wheelchair, they would be all ears.

But a crazy person with a dog?

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27 Comments

  1. So, so sorry Laura, that you are not doing well. Hoping you feel better and sending you hugs.

    Reply
  2. Laura, sorry for your many trials in the healthcare system. Especially that Atina is looked upon as a threat and not a blessing! Your total emotional and physical care should be the concern of a medical team! That includes service dog Atina! What’s wrong with those medical & clinical people! Your comfort is what’s important. Take care! 💛 Elizabeth

    Reply
  3. I feel the same way
    It’s you against the world
    Only you don’t have the witts as you once did to come out the other side
    A win
    But now you lose every time
    I spent 6hrs in the hospital on Friday
    The Dr was supposed to call and say I was coming
    Only he didn’t
    They tried to get him but he wouldn’t respond
    I heard all of this because they put into a room next to t h e nurses station
    I’m still in pain
    God do I hate it when they won’t listen
    You are so rite
    The engine is still good but everything around it needs fixing
    Great post Laura
    As always Sheldon

    Reply
    • God how frustrating and for me it would be both anger and desperation making headaches, high blood pressure, urge to throttle that doctor, report him to the State Medical Board for abandonment, which is what he did…I tell you, if I were still able to practice I would end up back in the bin, because there is no such thing as a doctor any more. Being a doctor used to mean you had a meticulous moral compass and total devotion to your patients. It was a calling, not merely a high paying job.

      I’m really sorry that happened to you. It makes me cringe, personally, because of that doctor’s betrayal of the profession when he abandoned you. I hope the fucker has a good excuse, like he was run over by a train…

      Reply
  4. Deep breaths, Laura. You can do this and are much stronger than you think right now. Some of that strength is learned strength. You learned it when you dealt with the aftermath of April 22, 1970. You learned it when you watched people pull back from you because you are supposedly “crazy” and might do something really weird at any moment. They don’t know you have been “dealing” for decades with people who have the understanding of an anime doll. You are better. You are wise. Unfortunately it is you who must be patient, who must bring them along, understand and educate them. I’m sorry so much is hitting you right now but you will get through it in fine shape, the way you always have in the past. I’m right here at your back. Call on me anytime. Anne

    Reply
  5. I am wishing the best for you. It is a difficult path we must travel with bipolar and other mental issues.

    Reply
  6. I hear your frustration and it sucks not having a solution. I mean people in wheel chairs still get the wide berth. I think it is a beautiful approach to mental health that you have your friend and support service dog. My partners mother has MS and last year (in the U.K.) she has been given her own service dog to help her in whatever way Una can. There are so many people with mental health that don’t want to rely on medication all the time and when a perfect union of an animal and a human working together as natural as nature is ,people freak out. I don’t get it. I do get you though. So, I have know other skill but to say I’ve read what you have to say and I get it.

    Reply
    • Thank you, Daisy. These are beautiful words. Yes, the partnership with this wonderful creature who is stretched out next to me in the bed right now like a body pillow, in fact I’m using her to put my feet up right now because I have blood clots in my veins, is something very rare and precious. We work as a team, as best friends and den mates. Except for squirrels, bunnies, cats, and other small animals, which set off her wolf drive. But she’s hell on flies 😈🐝

      Reply
  7. Laura,
    I understood every word you wrote here. This post, it is so spot on, sadly.
    This is how I feel, especially, when I have to go to a psychiatrist or clinic, because I know the behind the scenes, as you put it.
    I always imagined from other medical professionals I knew it was the same, different disease.
    I can’t imagine how terrified you must be when getting treatment but you described it well.
    I am sure we could swap stories about the difference in treatment when or if the bipolar bomb is dropped. It is so very many things I can’t name them all. Ha! I would start with four letters.
    This just spoke to me. My heart broke for your physical pain. As well as what you have to endure and overcome. I’m so glad you have Atina. I want to say fuck em. Sometimes, we both know it’s not that simple. It should be.
    Sending love always, CC

    Reply
    • Hi CC, I’m glad this spoke to you. I think there are many experiences we share. If we got together, we could talk for a week!

      I wrote a post with the title “Crazy People Get Sick Too,” based on what a mentor of mine who was a dear friend and crackerjack ER doc. When he precepted med students doing their ER rotations, he said that over and over, trying to drum it into their minds that not only do people with mental illness get sick and injured like everybody else, but also many physical illnesses are accompanied by psychosis, for example, encephalitis, liver disease, UTI in the elderly, various toxicities, and other life threatening conditions. Cases of physically ill people being locked in “the quiet room” and found dead when the psych resident happened to wander by next morning are legion. There is so much that is out of our control when we become “psych cases.” That’s why I mostly don’t mention it. It’s on a “need to know” basis, and most of them don’t need to know.

      Reply
  8. Sucks. I’ve not had the same experience, but no doubt the fact that I’m “high functioning” with bipolar type II and physically healthy helps. I wonder, though, if what helps is how I present myself to others. Forgive me for stating it, but when we project weakness, when we fear abuse, bullies jump on us – not just those with mental illness, but all humans – all animals. Animals attack animals they perceive as prey. I do not mean to blame the victim. The predators are responsible for being predators. Any of us can become prey. But predators tend to attack the weakest. Unfortunately, as you have multiple health issues and a failing body, predators, bullies, are more likely to dismiss and attack you. Horrible that humans cannot even rise above Atina. She attacks those she perceives as threats, not those she perceives as weak.

    Reply
    • Um…no. The opposite. I intimidate people. I am a disabled top level executive, remember. I don’t take any shit. I hold everyone accountable from front desk to billing. Clinical staff fear me, because they know I know. I have promised the anesthesiologist that if he thinks he’s going to do general anesthesia for a simple arthroscopy, I’ll go elsewhere, because I’ve had six surgeries with local and/or regional anesthesia with IV backup, and I’ve watched it all on the screens. I may not toot my own horn, but I’m nobody’s prey. Nobody’s. I have my own private fears, which I express in my blog, but in public I’m hard as steel, and that has its own set of problems, naturally. I may be terrified inside, but no one will ever see it. I know how to be nice and make people feel warm and fuzzy….But don’t cross me.

      Reply
  9. I fully understand your mental and physical pain. I’ve seen it with my daughter who is a veterinarian and had to stop working due to a variant of RA. Every time she had to go to ER or a new MD she was treated almost as someone with a contagious disease. In general MDs don’t know much about auto immune disease and would rather not treat you or treat with mistrust because “you know too much” or they perceive you as either drug seeking, a know it all, or a crock pot.

    Please stay strong. You can do this, I just know you can. I believe you are a very strong person and to hell with those jack asses who don’t approve of your dog. Can you get her certified as a service dog? Would that help? Or maybe she is already certified and I’m not aware of that.

    Reply
    • Yikes, I’m sorry about your daughter. That must be hell. I’m surprised they treat her so badly. RA is a physical disease. Does she have a rheumatologist?

      There isn’t a formal registry for Service Dogs, at least not a real one. There are numerous outfits that will issue a fake “certification” for a fee, but they are totally fake. The real Service Dog community has arrived at a basic set of standards, and the Americans with Disabilities Act which is a part of the US Department of Justice has standards which apply to business owners, as to what questions they can ask us, and things they can’t do like charge a fee for the Service Animal.

      Whoops, my canine partner needs to go outside!

      Reply
      • Yes, she now has 0ne( in Austin) that she likes very much. She had to go to Dallas to get diagnosed and that was about 2 &1/2 years ago. Her meds are so expensive and Obama care was good for a while and then she was forced to take on some kind of crazy insurance. Can’t keep with all the details. She can’t sing up for new enrollment until July I think In the meantime she developled serum sickness from Humeria and then was put on Cimvia (sp) and it made her veruy sick for 2 day aftber each injection. Now her rhummy wants to put her on ??? and she will have to call various orginazions and or drug ompany to try to get the med for free. These meds cost up to 4k and beyond per month. Medicare,Medicaid, etc will not pay for those meds. We are not wealthy and there is no way I can help her out to pay. It is a constant battle much like your own battle which I can relate too because of my daughter’s trials and tribulations.

        Reply
        • This is so horrible. These drug companies make these “fantastic” immune modulators, price them beyond anyone’s reach, and then when you get then they make you sicker. Just makes you wonder….

          Reply
          • Yes as you well as a doctor that strange as it may be sometimes the cure can kill you. The bad part is that Humeria worked for roughly two years and then from out of no where her body rejected the med. Then cimzia just did not work and the side effects were making her very ill. If only there were a drug of one size fits all for what ever illness one has the misfortune to have inherited or acquired. The price of these drugs is what I can not understand. I think of the millions of people who are in the same boat as you and my daughter. Anyone that has relatively good health should thank God and their lucky stars.

            Reply
  10. My favorite: when an ER doctor assumes your seizure is alcohol or drug withdrawal. Or the paramedic who decided the allergic reaction was a panic attack. Made worse by my using the epipen and taking the powdered form of Benadryl. Asked if I really needed a hospital. Ok, I wasn’t wheezing by the time they got there because I used the first aid.

    I told him to transport. About halfway to the hospital, he told his partner to go to lights and siren. Turns out I was turning red and getting hives… And oxygen level was falling. That fool could have killed me

    Reply
    • Holy shit. If I hadn’t seen that crap happening every day of a great deal of my life, I would be scratching my head saying, “Holy shit! Thus stuff really happens???”

      I’m so sorry that you’ve caught the shitty end of the stick far, far too many times. Let’s hope you stay far, far away from medical types unless it’s on your terms, requested by you!

      Reply
  11. You’d think that with all the service dogs for deaf and blind people they’d be more accepting of service dogs for other conditions, given that they’re now around for people with diabetes and epilepsy too.

    I’m sorry that the system seems so weighted against you, Laura, and I wish there was something I could do other than pray. Xxx

    Reply

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