My Husband Lives With Scleroderma, Too

Lisa Weber avatar

by Lisa Weber |

Share this article:

Share article via email
Main graphic for column titled

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.

***

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

Cynthia L Whipple avatar

Cynthia L Whipple

I hope you are all trying the autoimmune paleo diet.It's very restrictive but after the initial period(you will feel so much better) she lets you add things one at a time(the paleo mom website that is.) I combined it with food allergy testing. I also felt better when sun bathing 15-20 min. for my vitamin D. Supplementing never seemed to work. Try this then go back to being a lab rat.

Reply
Lisa Weber avatar

Lisa Weber

Thank you for the alternative medicine suggestion, Cynthia. There's definitely a need for holistic treatments. Before making any dietary changes, it's important to check with your doctor. Certain foods can alter how medications perform.

Reply
Carol Volckmann avatar

Carol Volckmann

Lisa, your post really bit home! I had no choice - I am living with Sclaraderma and PAH. My husband, Dick, has a choice and has chosen to love and in everyday care for my needs and does all he can to be a part each step . I will share with him your post. Thank you and thank you Russ!

Reply
Lisa Weber avatar

Lisa Weber

Carol, it sound like you're one of the lucky ones! Having support and being loved is a blessing!

Reply
susan wendling avatar

susan wendling

I have just been diagnosed with Scleraderma. So far, no internal organs are affected, however it is painful to walk any distance. Does anyone find that that using a cane is helpful - thank you all and God bless.

Reply
Lisa Weber avatar

Lisa Weber

Hi Susan! I don't personally use a cane, but if you find it helpful then you should use it. I have all sorts of contraptions to use when my joints are angry. For example, Carpal Tunnel braces help my wrists and hand wormers help ulcers on my toes. This disease is rare, so we are the pioneers. Use whatever makes you feel better or helps you get through the day. And if you're not sure what will help, just start trying new things. Keep moving however you can- I find that if I don't use it, I will lose it! Best wishes to you and please share if you find that it is helpful.

Reply
philip Verikios avatar

philip Verikios

I'm also a caregiver for my wife who is suffering from diffuse scleroderma for about 4 years.
At the 2nd year she has done HSct due to the rapidly progress.
Now she is stable and she is hopefull for the future.
Have you consider about HSCT.
It is a hard process with a great risk but has a lot of benefits.

Keep your strength and faith and the future will be better

Reply

Leave a comment

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