My Husband Lives With Scleroderma, Too

People often ask me how I continue to battle scleroderma. My answer mirrors that of many others fighting awful diseases: I have no other choice.

I may not have chosen to live with scleroderma, but my husband, Ross, does every single day.

In the beginning, we fell in love hard and fast. It was us against the world — that was our motto. No matter what life threw at us, we would face it together. We didn’t realize we would be challenged so soon.

Scleroderma strains our marriage

During the early stages of my illness, it was unclear how quickly things would progress. As young parents, we were frightened that Ross would end up raising our girls alone. I remember exchanging glances as we walked past each other in the kitchen. Tears were faint but always present. Smiles were warm but always tense.

As the years passed, scleroderma became our routine. It lives with us in our marriage. Our free time is planned around appointments and medical bills. We try to block it out when we can, but it’s always there, putting a strain on our daily lives.

We wish we could walk away

At one point, I had decided I didn’t want to fight with my illness anymore. I felt overwhelmed by my limitations and the barrage of tests that made me feel less like a human and more like a lab rat. I didn’t want to die, but I also didn’t want to keep fighting with myself. The urge to quit visiting doctors and taking harsh medications was overpowering.

During this battle with depression, I realized that Ross had a choice. He could walk away from this horrific lifestyle. I wanted to set him free from the grips of scleroderma. My children could go with him, be carefree, and live without the burdens this awful disease forces upon them. The thought felt dreamy — being free from illness.

I will always cherish my family’s happiness most. So I sat down with Ross and explained that I wouldn’t blame him for choosing this option. I tried to convince him to take the easy path. It was the only way I could protect them from scleroderma.

He chose to stay and fight

Despite my efforts to take the chains off, Ross chose me. While he would do anything to cure me, he knew his decision meant that he was choosing to live with scleroderma. How can he be so strong?

On days when my joints are frozen in pain, he swoops in to do my daily chores in addition to his. He doesn’t complain when my medical bills prevent him from getting tickets to see his favorite sports team. And when I’m suffering from new symptoms, he doesn’t ask me if I want to go out. Instead, he grabs me some fluffy socks, wraps me in a cozy blanket, and cuddles me as we watch a movie.

I couldn’t possibly express in words all the ways Ross makes life worth living, nor could I share everything he does to make life easier. He is simply a blessing. My real-life superman.

Caregivers need support

Good caregivers are often overlooked when it comes to illness. They stand quietly in the background, cleaning up the mess. They weep silently as they stand by your side while you fight. When the suffering is unbearable, they sob uncontrollably with you.

Consequently, caregivers need support as well. They need time to unwind and practice self-care. To stay strong mentally and physically, it is important to find ways to manage the stress. This will look different for everyone.

Ross shares what helps him stay in the fight

Since Ross has managed to stay strong and nurturing through my seven-year battle, I asked him to share what helps him endure this lifestyle.

How do you manage stress?

“Running helps a lot. Just being alone in the woods helps me clear my mind and regroup. Country music puts me in a good mood, too,” he said.

What gives you the strength to keep going?

“You. The girls. I mean, it’s always been about raising our girls together and living our dream. We have goals to achieve. You grind through the bad times and find that will to keep going. I typically just think about how you’re a fighter and things will get better,” he said.

What else would you like to share with other caregivers?

“It helps to pray a lot. I also play with my mind and remind myself you only live once and to make the best of every situation. As long as you have each other, you will get through it,” he said.

Remember to say thank you

Caregivers always have a choice. If they’re strong enough to stick around, remember to lift them in praise. Voice how thankful you are for their efforts. They need time, patience, and attention, too. Make a constant effort to help them see their extraordinary strength and resilience, because it’s difficult for everyone living with a chronic illness.

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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.