How to get medical help with the red-flag of mental illness in your file

It’s no secret that I have become friends with my mental illnesses. I have denied them, hid them, fought them, accepted them, lived with them, shared them and embraced them. I have learned the things that I need to do in order for them to be my friend rather than my enemy. We now work together to allow me to live a happy, thriving life, and I use them to help so many other people in the process. They are a part of me just like any other part of me. I am comfortable with them and stronger than them; wiser than them, and they rarely try to fight me anymore.

Which is why I find the way that I am treated in the emergency room so offensive.

Someone warned me recently that if the ER sends me for a psychiatric evaluation it will put a big red flag in my chart. I told her, “Don’t worry. That big red flag has been in my chart for as long as I can remember. I’m used to it.”

On August 6th I collapsed in my home where I live alone. Thankfully I didn’t loose consciousness and was able to protect my head from slamming into the hard tile floor. My parents were out of town so I called my 77 year old grandma, sobbing. She rushed to my home only a few blocks from hers, and luckily she has a key. She put me over her back and practically carried me to the car where she took me to Delta Hospital Emergency.

I’m sure its no surprise to anyone that its not easy for a 77 year old woman to carry most of the weight of a 25 year old, so when we arrived she made me wait at the car while she got me a wheel chair, scared that I might collapse again and bring her down with me. This seems to be a common symptom for me these days – my knees or ankles giving out – usually I am able to catch myself with my other leg or grab onto something for support but once in a while I can’t, or both legs go out at the same time.

She wheeled me into the ER, got me checked in, sat with me a bit, and then left to get a newspaper. Of course the moment she left was the moment that the nurse began calling my name to take me in from the waiting room.

“Denise Askin… Denise Askin!?” the nurse kept calling as I waved my arms from the wheelchair.

“I’m over here,” I kept responding.

“DENISE ASKIN!!!” she shouts.

“I’m in a wheelchair,” I call back while flailing my arms in hopes she will come to help me.

When she finally approaches me she looks at me with disgust and without trying to hide the disgust or annoyance in her voice she asks me, “Well can you walk?!”

“Uh, umm, uh,” I stutter, “well, umm, I’m here because I collapsed.”

“Well did you walk to the car to get here?” she practically spits at me.

“Uhhh with a lot of help,” I whisper in shock.

“Well come on then!”

I think shes going to help me up, maybe take my arm to steady me. Instead she turns and walks toward the doors, me shuffling unsteadily behind her. As she approaches the doors, me struggling 10 steps behind,  she turns to tell me to hurry up.

Embarrassed, degraded, angry and sad, I sit in the line of chairs where you wait to be seen by a doctor. Over 3 hours go by without a doctor or a nurse even speaking to me. This is fine, I understand I was not high priority, I was managing my pain and sitting quietly with my grandma. I wasn’t gushing blood or on my death bed. I understood this and continued to wait patiently, grateful for my cell phone distraction and the company of my grandma.

Eventually I decided to try to walk and get a cup of water. I shuffle to the nurses station and begin to ask a nurse where the water station was. “Are you Denise Askin?” she asks.

“Yes.”

“Here, I have your ativan for you.”

I look in her little paper cup and see a large, white ativan that she seems to think I need to take. I recognise it with fear, as I’ve only ever taken that large of dose once before at the dentist and it made me so high that I had to phone back the next day to make sure I paid my bill.

“I didn’t ask for ativan,” I tell her, confused.

“The doctor wants you to take it. Just put it under your tongue,” she responds matter-of-factly.

At this point I’m very confused as to why this is being given to me, and I ask her why the doctor wants me to take it and how I can possibly be prescribed ativan without any doctor or nurse even speaking to me first. Is that even legal? I don’t think it could possibly be ethical. Then another nurse comes up behind me, “Denise? We’re ready to run some tests on you,” then to the first nurse, “did you give her her ativan?”.

“She’s refusing to take it.” the nurse replies.

Great. Now I’m crazy and defiant.

The second nurse encourages me to take the pill and still cannot tell me why or how I’ve been prescribed it in the first place. “Do I look like I’m having a panic attack to you?” I finally ask.

“Well, no…” she responds.

“Great. Then if I start to have a panic attack I’ll take it. But for now I am not anxious and I’d like to be able to explain to the doctor what’s wrong before being drugged.”

And guess what – I never did have a panic attack or get anxious during this visit, and my blood tests showed that my eosinophil levels were abnormally high. This is the white blood cell that fights infection. Imagine that. Someone with a history of mental illness coming to the hospital for something besides mental illness. Crazy right? Unfortunately, when you have that big red flag in your file, it is generally assumed that every time you walk into the hospital or doctors office, there is nothing wrong in your body and everything wrong in your head. You will never be treated with the same dignity and respect as someone who does not have that big red flag. Anyone with that big red flag will always have to fight harder for the same care and respect that someone without it receives. This is not just my opinion, ask anybody else who has it and I’m sure they’ll tell you the same – I know I’ve asked many people with history of mental illness and they’ve all said the same to me.

 

Tuesday I started to feel confused. Then I lost my ability to speak. I could see the words right there in the front of my mind, but I could not for the life of me figure out how to get those words from my brain to my mouth. And then I got a sharp shooting pain through the left side of my head and my legs went out from underneath me. Suddenly I was on the floor.

On our way to the emergency room I wrote on a napkin to my mom, “Do not mention Lyme”. Because my mom has sat in on Lyme support group meetings with me and also is in my online support group, she has seen everybody else’s warnings to not mention Lyme disease in Canada to an MD or in an emergency room because all they will do is send you for a psychiatric evaluation. Unfortunately my dad was not aware of this, and when the nurse was in asking questions he did what anyone unknowingly would have done, and said, “but I thought it was Lyme disease?”. And that was that. The nurse went on to explain that Lyme disease does not exist here, and I wrote down on a piece of paper (still unable to verbalise), “Canada does not recognise chronic or late stage Lyme.” The nurse read this and went on to tell us that the US doesn’t recognise it either. I know is not true because that is where my blood gets sent to and I have met several people through support groups who go to the states for their treatment. However, I still couldn’t speak and I didn’t have the energy to try to argue it so I let her continue to tell me that they would do their best to help with the immediate situation but would not be getting to the core of what’s deteriorating my body and brain.

After about 4 frustrating hours of trying to be able to get the words from my brain to come out of my mouth, my pain started to flare up. It started in my left knee, then trailed down my leg and into my foot, spreading through each of my joints and into my eyes. Then all of a sudden my head, neck, eyes, and ear pain shot through the roof. I went from calmly laying in the hospital bed to sobbing and kicking because the pain was so intense. I’m unsure of how long this went on for before suddenly I felt something in my head clear and I said “I think I can speak again,” and just like that the words didn’t get trapped in the front of my brain anymore and instead flowed freely out of my mouth like I had expected them to all along. So now my inability to verbalise was gone, replaced with unbearable pain.

The next bit is a blur and I’m really unsure of how much time passed but they hooked me up to an IV and filled me with fluid and pain killers. I’m not sure how long I slept for, it may have only been 20 minutes, but it was the best rest I’ve had in a significantly long time. It wasn’t until I had the relief from the IV pain killers that I realised just how much pain I’ve been living with for so long. I think after a while it just becomes the norm and maybe we aren’t always aware of just how much pain our bodies are trying to function with until its gone.

Sometime during my rest the resident who had been tending to me came in with a doctor who I hadn’t seen before. This doctor then told me that there was nothing wrong with me physically, and to please wait for a call for a psychiatric evaluation. He then went on to explain that Lyme disease doesn’t exist here, and that even if it did, he has worked in Lyme-endemic areas before and that the main symptoms are joint pain and a rash, and that it wouldn’t present itself in this way. Well, that’s funny, because I have an online support group of 1700 other people in Canada who have the same symptoms as I do as well as an in-person support group that is run by an MD, who also agrees with the rest of us. My mom even posted in the online support group when I went into the hospital to see if anyone else has ever lost the ability to speak or experienced anything that I was experiencing at the time. Many people responded to her thread saying that yes, this is something that has happened to them and that usually the only thing to do is sleep it off. One woman even commented that she lost her ability to speak for 3 months.

“Actually, there is a public health map available online that shows that we live in a Lyme-endemic area here in Ladner, BC,” I told the doctor.

“Yes, well, we have found ticks here with the Lyme bacteria, however you cannot get Lyme disease here.” he responded.

Shocked at the blatant contradiction in his single sentence I gave up and let him go on about how someone would be calling me in the next few days to set up my psych evaluation.

I could skip the evaluation, but that, I’m sure, would only add fuel to their fire and give them more reason to not treat me next time. I have no reason to fear the evaluation either, so therefore I will go – and when I do go, and pass it, what will the doctors do then when they no longer have mental illness as their scape goat? Don’t get me wrong – I understand why they’re sending me there. I have a history of mental illness, the Canadian testing for Lyme is not accurate (they only test for antibodies which many people stop producing after being sick for a long time, please watch a short video here, this video is based in Europe but explains really well what is also happening in Canada and why we can’t get proper treatment and testing here) and they can’t or won’t figure out whats wrong with me. So therefore, they have to pass me off onto someone, and mental illness is the easiest scape goat. I also appreciate and respect the fact that they do need to rule out mental illness, and although my family doctor and I know that this is not due to mental illness, the ER doesn’t necessarily know that and still has to cover their asses, and since Delta Hospital does not have an MRI machine and I’m already waiting for a neurologist appointment that was marked urgent by one of their internists, checking my mental wellness is all that’s left for them to do.

What’s ironic is that 12 hours after leaving the ER I got a phone call to see if I could see a psychiatrist that day! In all of my years battling mental health I don’t think I had ever gotten in to see a mental health professional that fast. I battled long wait lists and can remember phoning and phoning different agency’s with no response and begging to get in to see someone quicker. When I was in the thick of my fight with mental illness I would have given anything to see a psychiatrist that quickly and get on the road to recovery. If that’s what I was battling now I would have dropped everything to be able to get to that appointment on Wednesday. However since its not, I wasn’t willing to miss work for it and will be going next week instead.

Meanwhile, the neurologist referral that was marked urgent and sent to Jim Pattison is what I really need right now. My Internist assured me that I would be getting in very quickly due to its urgent nature, and yet when I phoned to check on the timeline, the staff at Jim Pattison informed me that although it was marked urgent by the referring Internist, the doctors there deemed it routine, and I had been put onto a year long wait-list.

I know that a lot of people feel strongly that our medical system is the best in the world, but I have to respectfully disagree. I fought for years to receive the mental health treatments that I needed, and now that they’re not what I need they’re the only thing the doctors here are willing to give me.

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