Coping with mental health issues while managing a chronic illness

A columnist gives thanks for the support and resources that exist today

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by Shalana Jordan |

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Since the COVID-19 pandemic hit, it seems like mental health issues have been discussed more than ever. According to the Mayo Clinic, global surveys in 2020 and 2021 “found higher than typical levels of stress, insomnia, anxiety, and depression.”

But even after the height of the pandemic had passed, many patients like me were left with long-term complications or illnesses that developed as a result of COVID-19. What happens to your mental health when you just can’t catch a break?

In March 2020, my family and I had COVID-19. I was asymptomatic and had no clue that the illness had set off a catastrophic chain of events in my body. I didn’t know I was slowly dying due to a rare disease. By September 2020, I was gravely ill and went to the emergency room. My symptoms were more serious than I thought: I was in multiorgan failure.

After a month of testing in the intensive care unit and constant dialysis, plasmapheresis, and blood transfusions to keep me alive, I finally received a diagnosis of atypical hemolytic uremic syndrome (aHUS), an ultrarare disease. COVID-19 had triggered and activated the deadly disease in my body.

My journey with aHUS has been the most difficult and arduous experience of my life. My organs and body are forever changed, but the ordeal took an even bigger toll on my mental health. I wasn’t prepared for the onslaught of emotions I felt daily, including anger, anxiety, confusion, depression, disappointment, fear, grief, guilt, loneliness, sadness, and stupidity — I felt it all.

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

Discovering Why It Is Important to Take Care of Our Mental Health

A common experience among patients

About half of aHUS patients experience anxiety, aHUS News reports, while more than a quarter experience post-traumatic stress disorder. I never thought I’d develop a debilitating disease, especially at 36, when I was in my prime. I also didn’t realize how many comorbidities would arise in my everyday life. I feel like I’m constantly battling for sanity.

But I believe mental health struggles are probably a common issue for those dealing with a rare or chronic illness. It’s like your body has betrayed you or you’re a stranger in your own skin. I’ve even seen other aHUS patients say they felt like their body was a prison. This is a good analogy because while my brain is still functional, when I try certain activities I used to do, my body says no.

Although no one really wants to face mental health issues, I think we’re in a better position to deal with them now than ever before. Talking about mental health struggles used to be highly taboo. While it still is in many places, I think it’s becoming more acceptable in the U.S., at least in my experience.

A growing number of resources is also available. Not only can therapists, counselors, psychologists, psychiatrists, and patient advocates help, but support can also be found at in-person and online groups, websites, forums, and social media. Ten years ago, most of these digital resources didn’t exist on such a large scale. There are even companies like BioNews, the publisher of this site, that work to unite patients and boost connection in a world where being rare can feel lonely.

Mental health struggles can happen to anyone and make any problems we face much harder to cope with. But having access to more resources than ever is game-changing — like a guiding light through the darkness of rare and chronic illnesses.

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.


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