Living With Scleroderma Means Living With Grief, Too

Lisa Weber avatar

by Lisa Weber |

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My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. They are both saying the word “marshmallow” at my request. Their mouths fumble the multisyllabic word, producing the cutest versions. I hear myself giggle in the background of this priceless memory caught on tape.

Suddenly, scleroderma strikes again. The joy of reminiscing on the sweetness of my toddlers is replaced by the sorrow that once again wraps around my heart.

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Grief is part of living with chronic illness

I can’t help but notice how my laugh is loud and whole. There’s no raspiness to the joyous sound coming from my pre-scleroderma body. I sound so healthy and strong. I miss that laugh — the one that didn’t send me into a coughing fit powerful enough to bring up unwanted stomach contents.

I then hear myself talk in the video. As my tone adjusts naturally, it sounds so musical. It flows with ease. I’m jealous of the effortless voice coming from my lips.

I love that I have this melodic noise recorded. It’s a happy memory, and I want my children to hear the voice I was born with before scleroderma stole it. My true voice.

But at the same time, I hate it. It’s another reminder of what this disease has destroyed. My voice box is now scarred, which forces me to strain to make any sound. It sounds as though I’m always sick or have laryngitis. For some pitches, the cords don’t fully close, making it impossible for vibrations to occur. To be heard, I have to speak in a higher pitch than my natural one. This is extremely tiresome, and by the end of the day, I barely have the strength to hold a casual conversation.

Damage from disease is difficult to accept

It’s hard to adjust to the damage this illness causes my body. It happens so quickly. People have tried to console me by saying everyone changes with age. While that’s true, aging is a slow process. Waking up one day with a crackling voice and finding out you’ll never again speak fluidly is not the same as developing wrinkles over decades. Looking in the mirror and seeing a nose that has narrowed and lips that have disappeared is not part of the natural aging process. I would love to see an older version of myself. Instead, I don’t recognize who I’ve become on the outside.

I mourn for the things I’ve lost. And that grief slips into the most unexpected moments.

I experience it when I stop to catch my breath halfway up one flight of stairs. It consumes me when I forget that I can’t close my fingers around the change the cashier hands me, and it embarrassingly scatters on the ground.

I’m learning to live with my disabilities, but they still haven’t become “normal.” I’ve lost the ability to live subconsciously, to move through a day without having to compensate. Will I ever get through a day without comparing who I am now with the person I was before getting sick?

The destruction is relentless

Unfortunately, accepting physical changes isn’t the only challenge. Not having enough time to mentally process those transformations is sometimes worse. Before I can learn to accept my current disability, a new one rears its ugly head. It’s a constant struggle. It’s similar to your home being damaged by a hurricane, but before you can rebuild, an earthquake hits. Chronic illness is a revolving door of destruction. No matter how strong and prepared I think I am, it’s difficult to stand on trembling ground.

Working on mental health is important

Because scleroderma affects us emotionally as much as physically, it’s important for to have ample opportunities to grieve, no matter when those emotions sneak up. We are all allowed to feel anger, sadness, denial, and acceptance. The stages of grief apply to every type of loss. Feelings are normal!

Processing and acknowledging these emotions can lead to better mental health — a goal we should all strive for. I believe this is the only way we can find the joy that awaits us on the other side of each scleroderma storm we survive.

***

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

Barbara avatar

Barbara

It is good to hear from those who share this awful disease. The authors are telling their experiences and it is helpful to hear how they try to cope. My family does mot understand so I feel grateful that others share as I have nobody to talk with who will try to understand the horror of this disease

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Josephine Salazar avatar

Josephine Salazar

Thank you for sharing. It is hard.to explain to others how waves of grief sweep over me when I least expect. On good days I almost feel "normal". Then my limitations.hit when I try to do all the.things that I used to do. Reality stinks! I am grateful for a.loving God who carries me.through those.times. Be well.

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Sheila covington avatar

Sheila covington

Dear Lisa just read your article about grief with Scleroderma I was totally moved by what you said never really looked at my disease quite like that before.. I’ve got Scleroderma had it now for 15 years and yes it does physically and mentally wear you out sometimes and people don’t understand what you are going through.you do feel all alone sometimes.it gave me reassurance reading your article that I’m not on my own with this terrible unseen disease..
So thank you for writing your artical it made me feel very upset but at the same time reassuring about myself.
Yours Sheila Covington

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Tobey Schwartz avatar

Tobey Schwartz

I could relate to the symptoms you described. I particularly liked hearing about your insight and challenges with your voice. This symptom snuck up on me. It took awhile to realize it was here to stay. Like you, I am also plagued by fingers that don't close; buttons are out and writing my name can be difficult. Thank you for sharing your experiences. It helps to know others are also striving to cope with the physical and mental challenges it brings.

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Nadeen Laljee-Curran avatar

Nadeen Laljee-Curran

What a powerful article which rings so true and is beautifully written!

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Margitta Hapke avatar

Margitta Hapke

HI again Lisa, reading this article must make one cry !! Memories of a better past.............
Another story that comes deep from your heart. I think of you often.

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Sira Perez avatar

Sira Perez

Hi Lisa,
Thanks for this article. My husband is suffering from this debilitating disease for over 14 years. His voice has changed tremendously, I find myself asking him repeat what he’s trying to
Say because I can’t understand him☹️ He has difficulty speaking on the phone to others and has to repeat his sentences constantly. My heart hurt whenever this happens. His main problem is the loss of weight that he can’t seem to gain any no matter what he eats. He’s been diagnosed recently with gluten Intolerance so we have changed our diet and he’s seen a nutritionist; she is helping him and is always upbeat. Family and friends still don’t understand what he’s going through. Thanks again for speaking for all of us seeking advice from someone who truly understands. Many Blessings to you.

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Alex avatar

Alex

Your story brought tears to my eyes. Connecting with some of the things you deal with. Im so sorry. The grief of what I've lost, time and myself, has been the hardest to deal with.

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