What It’s Like to Experience Medical PTSD With a Disability

10 years ago, after receiving a flu vaccine, I developed a rare, life-threatening illness called Bickerstaff brainstem encephalitis. I was in a coma for 6 weeks, hospitalized and bed-confined for 18 months and in rehabilitation for 2 ½ years. It was a terrifying, painful, isolating experience that left me disabled and in a wheelchair. But I survived, adapted, and now thrive. I am physically and emotionally healthy, and am generally happy. Psychologically, however, I have demons — many demons.

• What is PTSD?

As a result of this experience, I have developed medical post-traumatic stress disorder (PTSD). I spent many years coping with PTSD flares that would appear out nowhere, sparking fear and rage, and leaving me sweating, trembling, and weeping. Over the last couple of years, the frequency and intensity of those flares have diminished tremendously, and I had begun to think I had conquered those demons. Lately, however, for the last few weeks, I have been plagued by memories long forgotten slamming into my mind at the most unexpected moments, interrupting my thoughts, breaking my focus and raising old, ugly emotions. Memories of abuse and mistreatment. Memories of neglect and cruelty. All at the hands of medical professionals…

I am in the CCU at RCH. I am confined to bed as I cannot walk or even sit up, and I still cannot talk. I ring the call bell a lot because I’m lonely and frightened. The night nurse hates this. She stands in the doorway to my room and peers at me, disgusted. “You are never getting out of here,” she says sadly. “You’re going to be here for the rest of your life.” I burst into tears, and she storms away.

I am in the ward. I am propped up in a wheelchair so I can practice sitting up. The nurses have warned me that I must stay there for at least 1 hour, that they won’t respond if I start calling out. I begin to slide in my seat. I don’t have the strength to boost myself up. I slide some more, and call out. No one comes. Slide more. My bottom has slid off the seat. I call again. No one comes. The seat belt slides up to my chest. The oxygen tube attached to my trach gets pinched. I begin yelling. No one comes. Blackness…

I wake up in ICU again. I am in a cool, bright room. They have transferred me to a hard table and are preparing me for a scan. They are jostling me badly, and my abdomen begins to spasm. I am having difficulty breathing. I can breathe out, but not in. It feels like my diaphragm is being squeezed by a giant fist. The five or so figures around me keep telling me to take slow breaths. They assume it’s a panic attack. It’s not, but I have no breath to say so. Now I’m beginning to panic. I can hear them beginning to sound exasperated. Then, every one of the figures walks away. I’m alone. I’m terrified. I’m blacking out. Air finally rushes into my lungs, and I come to. I begin to tremble an weep. The figures return, and one of them says: “Now that that’s over with…”

I am in the ward. It’s 11 p.m. I was supposed to get my medication at 10 p.m. I’m beginning to feel discomfort in my body, and pain. I am on extremely high doses of various medications. I ring the call bell again. Monica, the nurse that hates me, storms into my room, shouting: “I told you to wait! You are not the only patient here!” “But it hurts!” I shout, as she storms back out. Tears trickle into my ears. I try to be patient… it’s midnight now. My body is vibrating with spasms and everything hurts. I ring the call bell. No one answers. 10 minutes later, Monica storms in, carrying that magical paper cup and the syringe that will deliver its contents into my belly. “There,” she snaps, “Your meds.” She puts them on the counter where I can see them, and says: “Now you can just lay there and look at them!” She storms out. My heart plummets and I burst into tears.

I am in the ward, and my least favorite care aid and her partner breeze in, chatting about the weekend. It’s bath time, and I’m dreading it because this particular care aid always hurts me, won’t listen, and treats me like a child. She begins to prepare the water, and I say: “Only one person, please. Two people pulling at me is too overwhelming.” “We are running behind today, dear,” she replies in her patronizing sing-songy tone. “Well then, skip it, please. I don’t need a bath today,” I say. She rolls her eyes at her partner, and says: “You don’t know what you need, my dear.” She begins undressing me. I have severely limited mobility, so I’m unable to stop her. They each grab an arm, and begin scrubbing. It jostles me, and sends shooting pain down my arms. “You’re hurting me!” I shout. “Oh, shush,” she replies, “This isn’t painful!” They heave me onto my side to wash my back. My abdomen begins to spasm. Oh, no, not again! “Please…,” I say, trying to struggle. “Shush, we’re almost done,” she replies. I pass out…and wake up on my back again. I burst into tears. “Oh, don’t be so dramatic,” she sings.

I am in Queens Park Care Center. It’s temporary until my room at the group home is ready. I don’t like it here. It’s mostly elderly people, many of whom have dementia. They are not treated well. The nurses treat them like annoying children, and seem to have little compassion for their struggles. I have had to be transferred to bed from my wheelchair via overhead lift, so I can use the bedpan. The nurse is angry with me because I had to pee before my scheduled “toileting time.” I finish, and call her for help. She comes in, takes the bedpan away, then walks back out, saying over her shoulder: “I don’t have time for you right now. You’ll have to wait until I come back.” I am laying there, on the bed, with my pants and panties still around my ankles, vulnerable and exposed to anyone who may walk in. Unable to clothe myself, I call my husband. He leaves work, so he can come help me, as I have no idea when she’ll return.

These are only a few of the ugly memories that have rushed back into my mind and disrupted my life. I’m tired of simply trying to heal, trying to forget, or trying to ‘just live with it;’ I’m sick to death of hearing new stories of people who were abused, mistreated, or hurt by the very people who were supposed to be helping them! Over 200,000 Canadians will be admitted to the ICU over the next year, some of whom will also face a long hospital internment. Many of them will suffer psychological effects as a result, such as PTSD, delirium, depression, anxiety, and post intensive care syndrome (PICS).

So, why are people, who most likely entered their profession because they want to help people, hurting patients? Part of it is because some people just aren’t suited for a career in health care. Part of it is because, due to the increase in demand and decrease in resources in our health care system, many front line health care professionals are overworked and burned out, and don’t have enough time or patience left. But I believe it’s mostly lack of education and mindfulness. Most doctors and nurses are so focused on healing the body, that the mental and emotional well-being of the patient gets forgotten. Today’s training needs to include more focus on mental health and understanding the psychological effects of illness, trauma and hospitalization.

To be clear, I have encountered literally hundreds of health care professionals and workers, and only a handful were outright cruel or abusive, and about 10 percent were unfriendly, unhelpful, negligent or lacking empathy. The rest treated me with varying degrees of respect, kindness, compassion, gentleness — all the qualities one expects from people who are caring for us. But, because of the severe psychological damage that abuse or mistreatment causes, those few bad experiences stand out and are remembered long after the body heals. There have been many studies on how mental health impacts physical health, and it has been proven that good mental health and support has a direct affect on the body’s ability to heal. If this is the case, why is mental health separated from physical health? Why do so many health care professionals ignore the mental wellness of their patients, or even blame the patient for their behavior rather than investigating the cause?

What saddens and angers me the most is that, a decade after my own experiences, there are people still telling stories about their awful experiences, but nothing seems to be changing. We need to shed light on this situation. We need to share our stories, and fight to prevent people from struggling with mental illness and medical PTSD as a result of their hospital stays. We need to educate medical staff, and include regular training in sensitivity, bedside manner, mindfulness and patient-centered treatment.

So, this is a call out to anyone who has been mistreated by medical professionals, and whose mental health has been worsened as a result of hospitalization. This is a call out to people whose loved ones were hurt by their hospital/care facility experiences. This is a call out to all the healthy people who want to be treated with compassion or respect if they ever become severely injured or ill, because, after all, it could happen to you. Let’s share our stories, and tell the medical community that we need them to #HelpUsDontHarmUs

Follow this journey on the author’s blog.