Sometimes life deals a hand that tests us. We then look for ways to overcome those challenges. But what do we do when the bad news keeps coming? How do we keep moving forward when we feel like more weights than we can carry have been placed upon our shoulders?
During the pandemic in 2020, I appreciated telehealth appointments. It takes more than 30 minutes to drive to many of my specialists, and for some, the driving time is up to 14 hours! Having tests done locally and then meeting online has been quite nice.
Receiving bad news
For me, receiving bad news about my health is most challenging when I’m sitting in the safety of my own home.
Typically, I’ll release my tears and anger while sitting in my car. I’ll choke it back until the car door slams shut. Then I’ll grip the steering wheel and open the vault that holds my emotions. Sometimes it’ll take minutes. Other times, I’ll react for close to an hour before I can safely return home. No matter how much time I need to compose myself, the driver’s seat in a parking lot is my therapy.
My latest appointment started like many other online appointments. My laptop was set up in the front room of my house. Next to my desk, a large window let in the warmth of the sun. I enjoy this cozy spot and felt it was the perfect place to spend the next few hours. One thing I can always count on is having an extremely long wait time.
I wasn’t ready for more bad news
I didn’t expect the lung doctor to tell me that my lungs have deteriorated by 20% in just three months. The avalanche immediately began as soon as I heard this news. Every emotion began to crush me.
Somehow, I managed to continue taking notes on everything the doctor said. I knew the whirlwind inside my head would make it difficult to remember anything. My disease has started to rapidly progress, and I will now be at the mercy of whatever treatments the doctors can come up with to save my life.
I need time to cry alone
I felt panicked as I stood up and removed my headset. My oldest daughter was blissfully unaware as she recorded herself dancing for a TikTok post. My youngest daughter was snuggled under a fuzzy couch blanket while FaceTiming with her best friend. I had to quickly find a place to be alone to release my rage and fear.
Seeking refuge, I went to the other side of the house and inside a closet. I gripped onto the cold, wired shelving and cried. I focused on breathing to calm myself: in through the nose, out through the mouth.
I was unable to leave that closet for quite some time. I now frequently return to that spot, because my emotions continuously become too big to be contained inside my heart. This time, I’m struggling to figure out how to move forward.
Usually, I’ll create goals and immediately get to work on completing them. When I first learned that my lungs were deteriorating, I fought back and taught my body to overcome my disability. I would even run up to 4 miles at a time. When doctors started me on oxygen, I strapped a tank to my back and continued jogging. So, why can’t I figure out a way to fight back this time?
My body wants to lie in bed all day, safe under the covers. My mind is angered by my wasting of time and my moping around. My heart aches so badly it feels like it’s crumbling.
Depression is swallowing me whole. Overwhelmed by the likelihood that I won’t have the long life I dreamed of, I’m struggling to make the best of what I do have. Finding hope and mentally fighting this disease is vital to finding happiness again.
I have managed to force myself out of bed, and have even begun attempting to exercise. I’ve already given myself fully to my faith, and I am leaning hard on a God I wholeheartedly believe in. But it’s not enough this time. I must admit that I need help with digging myself out of the dark hole I feel trapped inside. My emotions are too big for me to handle alone. I’m asking for help, and I believe this makes me stronger than scleroderma.
It’s OK to feel like you are too weak to move forward. It’s not OK to give up finding a way to take that first step. Stress and fear can incapacitate even the strongest of people, so we need to be forgiving of our inabilities to cope alone. Reaching out for help is a sign of strength. It’s the acknowledgment that we want to fight and overcome what lies ahead!
Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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