When the Loneliness Hurts More Than the Pain
When you live with a chronic, debilitating illness, you likely share common symptoms of pain and fatigue, but you probably also understand the often overlooked symptom of loneliness. The resulting isolation that inevitably accompanies anyone carrying the burden of living with a chronic illness can be the most painful and difficult effect of chronic illness one must face.
I find myself struggling with loneliness on holidays, especially New Year’s Eve, which is one of my favorite. I used to love getting together with family and friends and ringing in the New Year with fun and fellowship with those I care about. I looked forward to watching that glamorous shining ball drop slowly from the tower while we counted down to the upcoming year, waiting for that first kiss of the year with my wonderful husband.
I loved wistfully dreaming with friends about what the future may hold for the following year, hoping that next year will be better than the last. It was the end of a chapter and the beginning of a new adventure, but now I find myself closing this chapter alone because of this stupid thing called mitochondrial disease.
Chronic illness doesn’t just take away your physical abilities. It doesn’t just make your mind less sharp. It seeps its way into every fiber of your soul and every aspect of your life. It makes your friends slowly forget who you are. They lose your number and forget where you live. They forget you can’t always go out but never come over, and therefore you merely disappear from existence.
I’m so grateful for my husband who will always be by my side supporting me, but with his job, I often find myself alone during the most joyous of occasions. New Year’s Eve, Christmas, Fourth of July — always alone. I only have my pain to keep me company. Sometimes the loneliness hurts more than the pain, but the pain always causes the loneliness. Maybe next year will be better.
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I spent 16 years searching for answers to my mysterious symptoms, and finally at the age of 32 I got my diagnosis. 3-Methylglutaconic Aciduria with Mitochondrial Dysfunction. It’s a very rare organic aciduria that affects my ability to process protein, and affects mitochondrial function. I have multiple system impairments as a result of my rare illness including mitochondrial disease, muscle weakness, lung disease, gastrointestinal problems, urinary issues, dysautonomia, and neuromuscular disease. I live with my loving husband of 13 years and my fur babies. My hope is to bring awareness to the struggles of living with chronic, rare diseases.
marie-harman