Finding Love While Living With Scleroderma
A columnist shares her thoughts on chronic illness and relationships
I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a relationship would require of them.
Sometimes I feel lonely. I’ll wonder “what if” — what if someone loved me for me? I’m not talking about a parent’s love for a child, or even that of a friend. I’m talking about mind-numbing, all-consuming, once-in-a-lifetime romantic love. I’m envious of those who’ve found their person in life.
I know it sounds like I live in a fairy tale. But sometimes I get stuck in the thought that I’ll miss out on romantic love for the rest of my life.
After living with scleroderma for over 20 years, I have a good idea about what it would take to be a partner to someone who has it. When I imagine my own partner, there are some traits I think are important.
A romantic relationship with a chronically ill person is marked by ups and downs. If you’re starting a relationship with someone who has scleroderma, you should be prepared for the fact that it won’t be easy. It requires patience, communication, and understanding by both partners.
Strength is a prerequisite
While many people face illness later in their partnership, it’s different when you start a relationship with someone who is ill. Compassion and mental fortitude are important. Mental strength is needed because there will be more health issues and sleepless nights than with a healthy partner.
But you will also need physical strength. While living with scleroderma, I endure specific symptoms that require help from a loved one or caregiver, including getting dressed, fixing certain meals, and even tying my own shoelaces.
There will also be limitations
Before you get into a relationship with someone who has scleroderma, you should really think about whether you are willing to go down that path. I confront a multitude of limitations every single day. I need someone who can do most of the household chores, such as vacuuming, preparing meals, and even making the bed, because I physically can’t do them.
Financial burden
I’ve lived on a limited, fixed income since I was in my early 20s. A serious conversation about how to manage finances would need to happen if I found my person. There are also costs associated with expensive medical care, prescriptions, and surgeries. My partner would most likely be burdened with most of these expenses.
Working through misplaced emotions
All of these concerns are a lot to face, and I wonder if I would be too much of a burden for someone to handle. Would love be enough to get us through all of it? If I am honest with myself, that question has prevented me from dating for many years.
It doesn’t feel fair for me to unload all of my disease-specific issues onto another person. Why would I promise someone that it would last forever when I suspect that might not be true? More importantly, I wonder, am I worthy of love?
Taking the good with the bad
There can also be upsides to relationships with scleroderma — more profound enjoyment, intimacy, and closeness, and the ability to make the best of any situation. When your partner is sick, focusing on the good days and learning to enjoy them might seem difficult. But if you let the bad days dominate, you can fall into a cycle of self-pity.
No risk, no reward
There are no guarantees in life. Health, love, and relationships are all special, and none should be taken for granted.
I believe it is important to love myself first, and trust that others can love me, too. It’s sometimes hard for me to follow my own advice, but I’m working hard every day to consider myself lovable despite scleroderma.
On some days, I still doubt that I could give the best of myself because of my illness. But I’m working on overcoming those feelings with a lot of honest self-reflection.
I’m still waiting on that once-in-a-lifetime love, but I know that if it comes knocking on my door, I’ll be emotionally ready to accept the offer.
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.
About the Author
Comments
Rosario Aiuto
MY daughter has had Scleroderma for 8 years or so she is 27.... she did find love and she did have her dream wedding ...and he is wounderful... so yes you can find that person .....You can and you will ! Ross Aiuto
Robert Mockridge
When I met my wife she was already suffering with schleroderma, and she said I would dump her when I realised she had so many problems.
I am so glad I ignored her
I had 11 fantastic years before it took her from me, and I was happy sharing her company in a waiting room than missing her company and sense of humour totally.
My wife had the guts to try for happiness, and we did, so go for it , it’s worth it
Geo Scombulis
BRAVO ! You took your vows straight to the Heart. Very commendable in this day and age when, for men, intergrity and virtue. are at a all time low
Laney
Thank you so much for sharing. As another singleton living with Scleroderma, the thought of being single for my entire life because of my illness is daunting and depressing. Lately I've stopped dating just because my heart is not in it (never mind the low quality of people on dating apps), and truly focusing on myself, my health, friends, family, and doing new and fun things. I've been happier than ever lately, and really have been trying to de-prioritize romantic relationships and men in my life. It's hard work but it's been worth it!
Teresa Shively
Great Article, Miss Amy!!
Ron
Before I developed scleroderma, I always thought that my wife would not be there for me emotionally if I ever got sick. We had been married for over 25 years and I was the breadwinner for the family. I knew my wife never really displayed empathy before I got sick. When I got diagnosed with scleroderma, I realized that my fears were well-founded. I had to ask for a hug after a day and a half after the diagnosis. Then, realizing that I had a 50% mortality rate in the first five years, my wife's main concern was that I needed more life insurance. I asked for help doing the laundry because it had to be carried down two flights of stairs---and I suddenly had difficulty with stairs. Her response was, "But you are good at it." It was not a good situation. I stayed in the marriage 25 years longer than I should have...
I eventually found the strength to leave. It was not something that I had ever planned. No one wants to suddenly be single in their 50's with a chronic illness and a fixed income.
Ironically, I found love a few years later. Unfortunately, due to unusual circumstances, it has not worked out the way I wanted it to. But that relationship gave me hope that what seems impossible, may actually be possible. I have also realized that it is better to be alone with my wonderful cat, than to be in a relationship without true love (or much love at all).
Do not sell yourself short! I think people who had seen difficult times and illness value life far more than people who have not dealt with challenges. Hope is the best of all things. Believe that anything is possible...
Amy Gietzen
Wow! thank you for sharing such a private and emotional story. I admire your strength to move forward and let love in again.
Jill Colodney
Ron, I truly understand.. difficult to write because of my fingers as you must understand forgive my typing errors i was compled to write you.. i too was married for 30 years and my husband walked out due to my illness. I am 54 years old with this disease and alone it is difficult very difficult. As you know stress increases flairs the stress alone of finding myself alone without the husband i thought loved me and no children is VERY DIFFICULT... But stay strong! i thank you for sharing your story.
Tim
Oh my. You touched my heart with such an open and vulnerable expression here of your hopes, fears and desires concerning a relationship. You said, "More importantly, I wonder, am I worthy of love?" and "I’m working hard every day to consider myself lovable despite scleroderma." These statements brought tears to my eyes. You are absolutely worthy of love and no illness could ever take that from you. Ever.
All relationships have challenges. All people involved in relationships have to work to love self, love another and tend the needs of each other. "In sickness and in health." Its a process and it requires work and patience. But I promise you this - its worth it, even when it hurts, even when we feel we may take more than we give. And sometimes we do. But that's OK. Our shared life with another isn't about balancing the scales of perceived equity. It's about giving what you have of yourself to give. And when the circumstances of life dictate that what you have to give includes an illness, then that too is what you share.
Amy, I've lived a long time. And I've witnessed many loving relationships endure and thrive through the challenges of lifelong and terminal illness. And you know what, I've never known any who regretted it or who wouldn't give anything to have their spouse back. These types of challenges tend to help us learn valuable truths about ourselves. And when a person learns to give care for another through tough times, they begin to see the true beauty of love, commitment and self sacrifice. And a person sharing all they have through their own illness finds the beauty in grace and the gift of vulnerability.
I wish you peace and grace, this day.
Elaine Hamilton
All your stories are coming from love of yourself. You are strong, persistent, and brave to share your stories. God bless you and keep you safe. You are all warriors. ❤️
Marc
Oh, Amy, so beautifully put. I have felt the same emotions - t's as if you entered my soul and revealed all. Scleroderma may tarnish us a bit but it can never erase our need for a deep and loving relationship. May the winds of fortune blow your way!
Celia
I really needed this article and to read these comments. I was just having a similar discussion about this earlier. I’ve lived with scleroderma for 16 years and was managing very well to the point where people didn’t know had it unless I told them because I really didn’t have a lot of issues with it until now. I was just discharged from the hospital about 3 weeks ago for having a scleroderma crisis. I had so much pain & ulcers in all my fingers, I couldn’t sleep, eat or anything. Now that I’m back home my life is totally different , I’m on oxygen because I get tired when I do even simple tasks, I was told to apply for disability and not to go back to work at all because I’m a teacher and the germs from the children are no good for my immune system. Just like that my life changed. I was dating someone before of this happened and now I’m not sure if he’ll stay or go & if he goes if I will ever find love with my condition. I’m trying to remain positive but I’d be lying if I said it was easy to do. I hope everyone here who desires love gets to experience it in this lifetime…