Scleroderma Brings Both Endings and Beginnings

Amy Gietzen avatar

by Amy Gietzen |

Share this article:

Share article via email
Scleroderma News | family | banner image for

When the COVID-19 pandemic hit the U.S. in March 2020, it was like time stood still. Many chronic illness patients were on high alert, constantly afraid of contracting the virus. Given the complexity of my disease, scleroderma, even the common cold can land me in the hospital, fighting for my life. I was, and still am, terrified of how the coronavirus might affect me.

COVID-19 makes every aspect of living with scleroderma 10 times harder. From getting groceries, to obtaining comprehensive testing, to properly monitoring symptoms, seemingly every action is now affected by the virus. Getting proper care for my rare disease amid a global health crisis has been an uphill battle.

However, one of the most difficult aspects of the pandemic is that I’m mostly unable to see fellow patients and loved ones. Grabbing someone you care for and holding them tight is an indescribable feeling, and COVID-19 has taken that away.

Still, our scleroderma community has maintained strong bonds despite the distance. It may be hard for some folks to fathom having a close and personal relationship with people you’ve never met in person, but we remain connected through videos, FaceTime, Zoom, and phone calls. Though we live all over the world, we are a tightly woven group, as our similar hardships bring us together. Each of us is unique, but we are family through and through.

Recommended Reading
Scleroderma News | family | banner image for

As a Scleroderma Patient, I Am All of These Things

So, when we lose one of our own to this awful disease, our cries of despair and outrage can be heard across the continents.

While COVID-19 has taken many lives over the past two years, our community has been rocked by the loss of amazing friends to the effects of scleroderma.

Grieving a person we love and care about is always hard. Their death can affect us emotionally, physically, and spiritually. But losing a fellow warrior to scleroderma amid the pandemic gives rise to even more complicated feelings.

Each loss sends shockwaves through the scleroderma community, but now we are forced to watch from afar, unable to be there for one another due to travel restrictions and health concerns. We’ve had to tune in and watch funeral services over the computer or phone, trying to bid our final goodbyes to dear friends we’d grown so close to.

As 2022 begins, I can’t help but think of all the losses in recent years. I find myself asking, “Why did I survive another year? When will my time come? And more importantly, why them and not me?”

I will forever wonder why my friends were taken so soon, but as a new year begins, I vow to carry their memories with me like talismans. I’ll hold them close to my heart, and never forget how their friendships changed my life and made me who I am today.

As I try to start 2022 in a positive light, I am choosing peace by remembering that those I’ve lost are pain-free. They will always be watching over me, encouraging me to keep fighting until it’s my time to join them.

***

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.

Comments

BETTY HETTCHEN avatar

BETTY HETTCHEN

Great Article, I myself was diagnosed in 2019 with Scleroderma. I do the best I can to keep things going around the house for My Husband and our Furkids 1 dog and 1 cat. My husband, Family, Friends, and the Lord are my support team.

Thank you for the Article.
Betty

Reply
Amy Gietzen avatar

Amy Gietzen

Thank you for the support!

Reply
Jane Biddle avatar

Jane Biddle

Great article Amy, thanks. Is there an on-line group so that we can swap stories, ask questions, etc.? thanks Jane

Reply
Amy Gietzen avatar

Amy Gietzen

Hi Jane you can find me on Facebook 😊

Reply
Kathy avatar

Kathy

In the last 5 years, two chapters in Florida have closed. There is only one left in southeast Florida. Please correct me if I am wrong. I live on the gulf coast between Sarasota and Ft Myers.

Reply
Kathryn Hillier avatar

Kathryn Hillier

How do I find an online support group ? I have no family and am basically alone since my husband passed away 2 years ago from kidney cancer. Thank you. My only saving grace in all of this is that I make rosaries and send to missions throughout the world. God bless each of you as we live with this illness.

Reply
Amy Gietzen avatar

Amy Gietzen

Head to www.sclerodermafoundation.org and you’ll find virtual and in person groups near you. But they are all virtual now because of Covid

Reply
NANCY RUDISILL avatar

NANCY RUDISILL

I have had scleroderma since 2015. Just wanted to say hi, I have read about you from several websites. Always good stuff too!

Reply
Sharon Caliguri avatar

Sharon Caliguri

Diagnosed in 2014 strange disease.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.