Discovering Why It Is Important to Take Care of Our Mental Health
Talking about our emotional life when living with a rare disease is not taboo
Mental health is a topic that we’re starting to hear about almost daily in our society. It’s a subject that’s been taboo to speak about for too long. Finally, though, it is being acknowledged for the impact it has on our lives — nearly 20% of adults in the United States, or roughly 50 million people, are experiencing a mental illness according to the nonprofit Mental Health America.
As a patient living with atypical hemolytic uremic syndrome (aHUS), a rare disease, I regularly see multiple physicians for obvious needs like medication management, constant lab work, monitoring damaged organs, and so on. But one of the biggest things a person with a rare or chronic disease deals with is how their illness affects their mental health.
I was diagnosed with aHUS in September 2020. It was a traumatic brush with death and left me in the ICU for nearly two months. My entire life was changed in the blink of an eye. I went from healthy and at the top of my game to medically fragile and in need of chemotherapy for the rest of my life.
Since my medical journey began, I’ve seen multiple doctors, had 18 blood transfusions, and needed a hysterectomy, plasmapheresis, and five month of dialysis. And I’m experiencing ongoing hypertension issues, muscular and pulmonary deconditioning, debilitating chemotherapy side effects, and May-Thurner syndrome.
That’s not to mention the financial hardships that my illnesses left me with. I lost my home, my car, my job, and quite frankly, my whole way of life. And all of those things are what bring mental health struggles to the forefront of my reality.
Asking the right questions
My primary physician recently retired, so I’m seeing a new one. During my first appointment with her, I had to tell her about my entire medical journey so that she could accurately address my current issues. I’m clearly not shy about talking about my experiences — it’s one heck of a story, so I never think twice about talking about it.
When I finished, she looked me right in the eyes and asked me something that not a single doctor had asked me before: “That’s a lot that you’ve been through,” she said. “How are you mentally? I mean, are you OK? Have you ever talked to anyone about this?”
My eyes started to well up with tears before I even realized it. Over two years into this nightmare and she was the first medical professional to ask if I was OK. That small gesture meant the world to me.
You’re probably wondering, “Well, have you talked to anyone about this?” And the answer is no. But it’s not because I oppose therapy — it’s because I hadn’t even had a moment to assess my mental health. Everything happened so quickly and suddenly.
Suddenly, I was dying. Suddenly, I was having surgeries and biopsies. Suddenly, I was out of work. Suddenly, I was in financial ruin. And suddenly, I had a dozen other medical complications. I’ve never had the time to stop and process how much this experience has affected me mentally.
It manifests in the “mom guilt” I feel daily because of how the situation affects my children. It’s the panic and anxiety I feel every time I walk into a medical facility. It’s the feeling of wanting to crawl out of my skin when needles pierce me.
It’s the impostor syndrome I feel when people look at me and say I don’t “look” as sick as I am. It’s the shame I feel for not having medical insurance or savings to fall back on when all of this started. It’s the guilt I feel when I’m having a hard day physically and can’t fully function the way I want my body to.
All of those feelings are related to mental illness.
Luckily, writing for aHUS News and its parent company, Bionews, gives me an opportunity to share and talk about my experiences with aHUS. Speaking about my medical journey gives me a type of power over my disease despite how much it has taken from me.
I highly recommend seeking therapy and talking to someone if you have a rare or chronic illness, or even if you’re a caregiver. These diseases and changes to our lifestyle affect us to the core. And no one should have to face it alone.
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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