My medical trauma unexpectedly resurfaced during a hospital visit

My heart began to race. My breathing became shallow. I felt a bead of sweat form and run down my brow. My stomach churned and a lump formed in my throat. Was I having a panic attack? Who knew that merely seeing a certain building could cause such a physical response?

I visited one of my dearest friends in the hospital today. She’s been to the emergency room several times with repeated issues, but last night she had to be admitted.

My best friend of over 25 years, she’s the one who dropped everything in September 2020 and drove three hours from another state to come sit with me in the intensive care unit. That was when I almost died from my first atypical hemolytic uremic syndrome (aHUS) attack.

My friend has been a part of every major life event I’ve been through, so seeing her in the hospital was jarring.

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As I write this, she’s thankfully on the mend and has a possible diagnosis. But when I went to see her earlier, she had no answers yet, and the thought of losing her was overwhelming and intense. It felt like I was treading water in a storm and fighting to keep my head above water.

I had so many questions and theories. I started reading stories of patients with similar issues to see if I could play Dr. House and solve the mystery myself. I wanted to interrogate her doctors and nurses, even though I knew they’re qualified and competent to care for my friend.

Did she feel this same level of anxiety when I was sick? Was she just as stressed when she sat in the hospital with me? As a patient, I was traumatized by my experience and now have some form of medical post-traumatic stress disorder (PTSD). But now I’m wondering how my family and caregivers were mentally and emotionally affected.

Rare disease patients have access to mental health resources, social media groups, informative websites, and in-person support groups. But I’m not sure how many resources are available to our loved ones and caregivers.

The other thing I wasn’t prepared for were the effects of my trauma. I’ve come to terms with the fact that my medical odyssey has left me with some PTSD, which I struggle with every time I have blood drawn or have an IV run for my chemotherapy. But I didn’t expect it from just sitting in the hospital. Medical trauma is a strange thing.

Normally, whenever I’m in a hospital, it’s because I’m dying — my kidneys are failing, my liver is bleeding, my red blood cells are being destroyed, I need surgery, my blood pressure is high enough to kill a buffalo, or some other extreme situation. So my body responded with tension and anxiety.

Fortunately, my friend has possible answers and can go home soon. I don’t plan on going to anymore hospitals for a while!

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.