Staying positive helps me get through my darkest days
I work to put mind over matter as I manage multiple rare diseases
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I’ve always believed in the concept of “mind over matter” — the idea that a person’s thoughts, feelings, and beliefs can somehow override and maybe even change the outcome of a situation. That it’s important not to succumb to dread, but to hold on to hope and remain optimistic. This way of thinking has helped me since I nearly died from multiple rare diseases.
For as long as I can remember, I’ve dealt with issues related to hypermobile Ehlers-Danlos syndrome and lupus. But life was always manageable. I worked full-time jobs, exercised, had a social life, got married, and had kids. I experienced daily symptoms, but I treated them as “quirky” parts of me. However, in 2018, that all began to change.
After a bout of abnormal bruising, nosebleeds, and fatigue, I had some blood work done, and some of my levels alarmed my doctor. I was ultimately diagnosed with a rare blood disease called immune thrombocytopenia (ITP) that was causing my immune system to destroy my platelets. This made a lot of sense, as I’d always been anemic and bruised easily.
Since I had a diagnosis and treatment plan (two blood transfusions and corticosteroids), I figured my ITP was taken care of. But that was only the beginning.
Staying positive became harder, but also more important
After my ITP diagnosis, I noticed I was getting sick more often. I owned a preschool, so I was constantly around sick children, and I was catching every illness going around. I’d get sick, take antibiotics, improve, and get sick again a few days later. It was exhausting.
But I had two children under 5, a divorce to deal with, and a business to run. That’s when I started working hard to remain chipper and happy. Because I also have bipolar disorder, I was slipping closer to depression. But so many people depended on me. If I think positively, then positive things will happen, right? I asked myself this question often.
I had to make positivity and optimism a mantra to live by. I had to find blessings in each stressful situation and thank God for even the smallest win. This became even more of a necessity in 2020 when I almost died.
COVID-19 triggered an ITP flare, but it also activated two other rare diseases I didn’t know I had: atypical hemolytic uremic syndrome (aHUS) and thrombotic thrombocytopenic purpura. Basically, my immune system was in overdrive, destroying nearly every component of my blood while also causing blood clots to form in several major organs.
I spent nearly two months in the intensive care unit, needed dialysis for five months, and had 18 blood transfusions. I was in multiorgan failure, which caused permanent damage to my kidneys, and I will need monoclonal antibody infusions for the rest of my life. I also deal with nearly two dozen comorbidities. While my team considers aHUS to be my primary disease, I seem to experience symptoms of ITP more often than symptoms of my other diseases.
Between these diseases, the permanent damage they caused, and continued treatment, I lost everything I’d worked so hard for — my career, my home, and my car. It’s difficult to come back from that. It was one of the darkest times in my life.
But mind over matter, right? I kept telling myself this, but it was getting harder and harder to keep up the facade. Still, I continued. I thanked God for each blessing. I distracted my kids (and myself) with fun local family events. I slowly made friends in the rare disease world, locally and globally. And I stayed positive, pushing through each obstacle.
And with each positive thought, more positive things started to happen. I went a step further and invested more time in my appearance. I’d been living in yoga pants and sweatshirts, especially during dialysis and infusions, because I was always freezing and had gained back some of the weight I’d lost before getting sick.
So I trashed the comfy clothes and invested in a new wardrobe — one that turns heads and invites compliments, boosting my serotonin and self-esteem. It may sound silly, but it made a huge difference in helping me stay positive.
Is “mind over matter” real? Can we will good things into existence? That’s something for each of us to decide for ourselves.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
