Our Healthcare System is Broken…and not just because Doug Ford is a monster.

Warning*: this story contains discussions of self-harm and suicide.

Things have not been going well for me lately. I’ve been getting sicker and sicker, seem like I have less medical support than I’ve ever had, and there seems to be no plan or hope for things to get better.

I’m going to be as honest as possible here because I think it’s important that we have these conversations. That we’re honest about how we’re feeling so that others can know that they aren’t alone. And hopefully we can find a way out of these situations.

When I was having stress at work a few years ago I used to do this thing at night where I would have fake arguments with people in my head. I would project a certain narrative onto someone that I was disagreeing with at the time and then argue the points of that situation in my head. And it would spiral deeper and deeper in my head, and the rage would build.

I’ve started doing that again, but with my doctors this time. And it spirals to this dark place where I become a different person. Unable to see the reality of things, unable to rationalize a way out, unable to stop arguing with them in my head.

I get jealous of other sick people who are receiving care. I start thinking things like, “I’ll show them what sick really looks like,” and then start thinking about a list of ways I could harm myself to teach those pesky doctors a lesson. I think about marching into my local ER and demanding that they work with me to solve some of my problems, and if they don’t I’ll threaten suicide as a retaliation for their lack of support.

I do not want to die. I love life. I have a beautiful wife and daughter who I very much want to spend many many more years with. But my mind keeps spiralling to these dark place, mostly late at night, when I’m alone in the dark trying to sleep.

I had only slept two or three hours the night before, and that night I didn’t sleep at all.

So the other morning, we decided that it was probably a good idea for me to head over to the ER to have a mental health check and talk to a professional, and maybe I could talk to a doctor to see if they had any ideas about how to best formulate a strategy for my care. I also had an infected belly button issue that I needed to get checked out, so it seemed like a good idea to go. So off we went.

I arrived at the hospital and they triage’d me pretty quickly. They seemed to take my mental health concerns very serious. It seemed apparent that they were very concerned that I could hurt myself and wanted to do everything they could to protect me and prevent that from happening. And I really appreciated that sentiment at the time. It was comforting.

They asked me to go sit in the waiting room, and that now that I was in the crisis system they’ve developed if I left, they’d have to send the police to find me and bring me back. So if I could please stay and see the professionals that would be appreciated. Of course I agreed to this. I did however mention that due to my chronic illnesses that I suffer from, sitting in a chair for long periods of time isn’t something I’m capable of. Normally I can tolerate about an hour at most and then I really need to lie down. I also asked that when I did get put into a room, if there could be a bed in that room because sometimes the mental health patients just get put into a room with a chair and that wouldn’t be good for me. The nurse assured me that this was no problem and they’d be able to help me be comfortable.

So off I went to sit in the super uncomfortable chairs of the ER waiting room. I pulled up a second chair to elevate my feet which helps. The main aspect of POTS is orthostatic intolerance. Basically I’m allergic to gravity. Lol. When a normal person stands up, their body reacts instantly and counteracts gravity by constricting blood vessels to make sure blood flows to the brain. In POTS patients a variety of things can happen but the main problem is that these systems don’t work properly and either blood doesn’t get to the brain, or the systems that make this happen freak out and go haywire and malfunction.

So standing is the worst. I can only stand for about 5 or 10 minutes before I risk passing out. And like I said I can only sit for about an hour or so. There is a real risk of me passing out and falling and hitting my head (aka hurting myself), which could be really bad. But also there are a bunch of other symptoms that happen when I sit for too long. My chest starts to hurt, it’s difficult to breath; by feet start to hurt and turn purple because blood is pooling in my lower extremities; I get a migraine; my nose starts to hurt, I feel like I’ve been punched in the nose and I can taste blood; I get really dizzy and weak; and to me, what’s actually worse, is what happens when I get home later and finally lie down. There’s a bit of a delayed reaction and I get really sick when I get home. This generally lasts for about 4–6 hours depending on how long I was standing/sitting for.

As I was waiting in the waiting room a very nice older woman who had just been in a minor car accident came and sat near me. She told me that she had to go out to her friends car for a minute and if they called her name could I tell them she’d be right back. I of course agreed. More on her in a minute.

So after about an hour and a half of waiting in the waiting room, I was really starting to feel crappy. So I walked over to the triage area to talk to the nurse. I tried to explain to her (a different nurse than before) what was happening. I asked her if she knew how long the wait would be to get a room. She was quite rude with her response, did not seem to want to talk to me, and informed me that while I was 2nd in line, the wait was probably going to be 4–6 hours before I got a room.

I informed her that this wasn’t going to work for me. That I had a chronic illness that would not allow me to last that long. She shrugged her shoulders and said they didn’t have any beds (end of her explanation). I mentioned to her that this is a formally recognized disability by the federal government, and that I even have a parking permit in my car for accessible parking. And that I was asking her for an accommodation (which by law I’m 99.9% sure she’s required to work with me on finding an accommodation).

She asked if I wanted to leave. I got quite upset at this point and told her that I was told I’m not allowed leave and that the police would come and find me if I did. She just sort of shrugged. So I went back to my seat to try to come up with something that I could do.

As soon as I got back to my seat I saw that the nice woman who had asked me to listen for her name had returned. And I immediately knew why she went out to her car. She needed to have a cigarette. Well, that was great news for me. With my MCAS, I’ve become more and more sensitive to smells. Just a whiff of perfume in passing can be enough to set off an MCAS flare that leaves me curled up in the fetal position in the dark for 4–6 hours in complete agony. And I instantly knew that the cigarette smell would cause a similar reaction.

So I got up and went back to the triage nurse and asked her if there was anywhere else I could go to lie down. She took me down a hallway where the people suspected of having COVID symptoms are asked to wait, and said I could wait there. Awesome. But it was just a row of the same chairs. I asked her if I could just lie on the floor then. And she shrugged her shoulders and said sure and walked away.

So I put my coat down on the emergency room hallway floor and laid down. Ironically I was directly under a sign that read “Keep this area clear of all objects”. But I’m a rebel so I didn’t care.

Lying on the hard floor was not ideal, my hip hurt, I was sort of in the way and felt like at any minute I might get rolled over by a gurney or wheelchair. But it was better than sitting in a chair. And at least if I passed out I was already lying down.

I was really tired at this point having only slept 2–3 hours in the past two days. So I drifted in and out of sleep for the next 1.5 hours. At one point a fairly disgruntled nurse asked me what I was doing there. I explained to her the situation. And she shouted at me “No why are you at the hospital today”. I told her that I had already been through triage and if she wanted to she could look at my chart. She said fine and stormed away.

Eventually someone came and told me that they had a room for me. It didn’t take 4–6 hours thankfully, but it was close to a 2 hour wait. I gathered my things and slowly (it was hard to walk at this point) followed the nurse to my room. As soon as I walked into the super tiny room with two chairs and a stool I felt my blood pressure shoot through the roof. I started to fall apart. Exasperatedly I explained to the nurse that I had asked for a room with a bed and that the triage nurse said that wouldn’t be a problem, and I explained why I needed the bed. She told me she was just the person showing me the room and this was the room they put all the mental health patients in.

I sat in the chair (which at least had a little more padding) and the mental health crisis worker came in to talk to me. I immediately broke down and started sobbing. I had to just sit there in silence for 5 or 10 minutes before I could even speak I was so upset. But eventually I started telling my entire health journey to this crisis worker as she took pages of notes. She asked what I hope to get out of this appointment. And I told her that I just hoped to talk to a doctor about some strategies for how to navigate the healthcare system to hopefully find a path forward.

I explained that all of my mental health problems stemmed from the fact that I felt helpless and hopeless. That I felt lost and didn’t know what to do so that I could stop feeling so sick all the time.

After spending about 45 minutes with me she went to talk to the doctor and mentioned that they would be in shortly. As she left the room I could clearly hear her conveying the contents of our conversation to the doctor. It was a much shorter conversation than I expected. And luckily the doctor came in right away.

The doctor said that she believed everything I was saying, and that she believed that I have all the illnesses that I have. But that the medical community doesn’t really understand how to fix any of my issues and it’s really hard. And that the best people to talk to about this are the specialists in the field. I was so tired and fed up at this point that I didn’t even push back against this. I knew this was going to be the outcome at this point and I just accepted it and wanted to go home to bed.

Which brings me to the crux of my story. The thing I’m most upset about. And the reason I think our healthcare system is truly broken.

As I mentioned, they were quite concerned about me potentially causing harm to myself. They asked me several times before they would release me if I felt like I was going to harm myself. I said no, and that I now had the tools and resources to deal with that if I felt like I reached that point again. And so based on these clearly thought out protocols, they were concerned about me harming myself. But I was only considering harming myself because I felt exasperated, lost, hopeless, and that I was so tired of being sick. And their actions, the processes of the ER, directly led to me feeling worse physically and mentally. Directly led me to being put in a situation where if I had passed out I could have hit my head and caused serious physical harm to myself. Directly led to my symptoms being exacerbated and made worse. And they didn’t even notice that.

I understand that hospitals right now are very overwhelmed and under-resourced. I understand that Doug Ford is intentionally gutting our healthcare system so that the private sector can swoop in and save the day. And so I do have sympathy for doctors and nurses being put in untenable situations. But we really do need to do better. We need to treat people with chronic illnesses better.

My family doctor doesn’t have the training to treat these illnesses. She doesn’t even have the most recent information regarding a few of them. The internal medicine specialist overseeing my treatment, only seems concerned with my vitals (BP and HR), and doesn’t have answers for anything else. And quickly just changes the subject when I try to address my other issues. The POTS specialist I saw once, only focuses on diagnosis and not treatment. The MCAS specialist I saw at the start of summer and who I’m seeing again in January, really focuses on the type of MCAS that causes anaphylaxis, so he’ll probably provide me a few things to try but then won’t see me again. The ME/CFS clinic in Toronto has a two year waiting period. And from what I’ve read lost their good doctor to the US, and so there’s a lot of mixed reviews. And so I don’t know where to turn, and who to get help from.

I understand that there isn’t a cure for POTS, MCAS, or ME/CFS. But there are a list of treatments that have been effective in some patients. And like real treatments, some quite simple, not snake oil. But I need a doctor to access them. And I’m not a doctor, so I need someone to recommend the right treatment. And to oversee it’s effectiveness, and make corrections and alterations if needed.

I have a six page document outlining my current symptoms. And when you meet with any of these doctors you get to mention one, maybe two things if you’re lucky. And so having multiple complex, multi-system, chronic illnesses seems almost impossible to deal with at times.

I just want a medical professional to take a little bit of time, work through my symptoms with me, order a few tests, write a few prescriptions, and come up with a treatment plan for me. I don’t think that’s too much to ask. I don’t even need to get my old life back. I just need a little help getting out of this hellscape that is my current life. I want to have a little joy in my life here and there. I’m fine with a good day being followed by one or two bad ones, if I can just have a few good days here or there. If I can just spend and enjoy a little time with my family.

Are You in Crisis?

If you are experiencing a mental health or addictions related crisis:

• Contact your doctor
• Go to the nearest hospital
• Find resources at ConnexOntario
• Call 911 or Telehealth Ontario at 1–866–797–0000

Feeling Suicidal or Think Someone Else Is?

If you are thinking of suicide or think someone else may be, there is help. Call your local crisis line or mobile crisis team or the police, or go to the emergency room of your local hospital.

Huron Perth Helpline & Crisis Response Team

The Huron Perth Helpline & Crisis Response Team is available to all residents of Huron and Perth Counties, who are experiencing a mental health crisis.

The Huron Perth Helpline & Crisis Response Team offers crisis assessments, brief crisis therapy, education regarding mental health and addiction services, and treatment referrals.

This service is offered both through a helpline and in-person assessments and the hotline is available 24 hours a day, 7 days a week.

The phone number for the Huron Perth Helpline & Crisis Response Team is 1–888–829–7484

Face-to-face assessments are offered in the following locations in Huron and Perth Counties:

• Hospital emergency departments (Goderich, Seaforth, Clinton, Wingham, Listowel, Exeter, Stratford, and St. Mary’s)

• Homes and communities

• Schools

• Doctor’s offices

Suicide Prevention

**The Centre for Suicide Prevention** is an education centre which equips individuals and organizations with the information, knowledge and skills necessary to respond to the risk of suicide.

**Ontario Association of Suicide Prevention** provides resources, education, facts and figures and news and upcoming events.

**The Canadian Association for Suicide Prevention** provides information on where to find support; including a guide for early responders and a prevention toolkit for schools. Their site also provides a listing of crisis centres.