Nightmare Parade

~Alyssa Zeldenrust

I owe my life to wonderful, competent medical professionals, and I am forever grateful. I am, however, also dealing with severe PTSD due to my ongoing struggle with poor healthcare. I’ve experienced endless patience and jarring cruelty, common sense, and needlessly harmful protocols.

I have had Crohn’s disease since 2003 and a permanent ileostomy since 2010 with a few subsequent surgeries. In 2021 I lived more in the hospital than at home, and chronic illnesses have truly dominated my life. I have constant medical appointments and the alarmingly consistent demand that I go to the emergency department over every tiny little thing.

I like some of my medical team. However, I’m deeply frustrated with some of the issues I have with others, the medical maze of bureaucracy. Throughout my chaotic journey, I have grown to quickly judge whether or not a healthcare professional would be a good provider for me. It’s always reassuring when I have continuity of care with my favorite people. Although, I don’t get to pick nurses in clinics and during hospital stays.

Judging the quality of healthcare is purely subjective, but here are a few aspects of what I personally consider good healthcare:

  • Patience while I explain my history, questions, and needs
  • Voluntarily advocating for me
  • Hearing me out instead of invalidating my feelings, symptoms, and experiences
  • Following up in a timely manner
  • Being open to outpatient care when possible and appropriate
  • Showing compassion when I’m crying
  • Keeping me well informed at every point of care
  • Thoroughly explaining the side effects of medical treatments

On the other side of the spectrum, a few aspects I consider to be  poor quality healthcare:

  • Treating me like a nuisance
  • Refusing to consult with colleagues from other departments
  • Gaslighting
  • Demeaning nicknames
  • Condescension
  • Dramatic delays getting care
  • Ignoring mental health issues and general health history
  • Refusing to consider and manage pain
  • Keeping one foot out the door and leaving as I continue asking questions
  • Disregarding their impact on me
  • Openly mocking patients
  • Limiting communication to only one form of contact and disregarding a patient’s preferred method
  • Outright lying

Quality of healthcare has a lasting impact on patients and, in some cases, has a dramatic effect on mental and physical health. When things go wrong, there usually isn’t much, if any, recourse for struggling patients. If there were some accountability, healthcare providers would be forced to improve as opposed to embracing mediocrity and poor quality.

Good healthcare is only possible with providers who commit to accountability and professionalism. Short of that, healthcare will continue to get more complex, the quality will worsen, and patients will suffer on a widespread basis. Good healthcare can strengthen a person’s hope and optimism. In comparison, lousy care can lead to despair and additional pain.

The resulting PTSD flashbacks from incidents of horrible care interfere with healthy sleep cycles and a host of other physical manifestations of stress. Inadequate care doesn’t just mean inconvenience or feeling irritated with minor issues. It’s a high-stakes situation with employment and mental health on the line as well. Pain ends up with too much control if ignored by medical teams, but it’s at the root of many conflicts with patients.

On the other hand, good care can bring peace of mind to difficult situations and incredibly stressful chapters of our lives. I’ll never forget one of the residents during an extended, brutal hospital stay. He kept me updated and calmed me down repeatedly. At the end of his time with me, he played his violin. He had taunted me all day that he had a surprise for me, and he was right. I did like it. While not all medical personnel can pull off a serenade, the point is that earning patient trust is worthwhile, and it stays with people just as the bad memories do. 

Better care leads to less medication, if you’re lucky. Each patient can improve their care, but it may require help. The chronic illness community is helpful when dealing with lousy care because it can provide an opportunity to vent, troubleshoot, and encourage each other.

Exceptional healthcare is scarce these days, and apparently, COVID has changed behavioral standards completely. Now it has become acceptable to mistreat patients because of staffing issues. When healthcare issues are brought up, the response is often defensive and aims just to accept poor treatment instead of addressing the patient’s problems. If the staffing issues continue, our healthcare system is in trouble and will continue to traumatize people unnecessarily. 

If accountability is reintroduced, there is hope for chronic illness patients whose lives aren’t within our control. We are owned by healthcare, good and bad. It’s up to each of us to fight for better healthcare.

Alyssa Zeldenrust has had Crohn’s disease since 2003 and a permanent ileostomy since 2010. She is involved in the chronic illness community because she has found it to be important in her life as well as the lives of others. She loves sparkly things, bright colors, art, and handwritten letters. She loves her job at Stealth Belt, the opportunities it presents, and her lovely team of brilliant coworkers. Her healthcare situation is a mixed bag, but everyone in her life agrees she’s a complicated woman. She takes it in stride as a compliment. You can connect to Alyssa in the following ways: Her Art Page on Facebook, @partiallystuffed, or @legend_of_zeldy on Instagram, and she is also on RedBubble, TikTok, and Twitter.

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