Finding Love While Living With Scleroderma

Scleroderma News ​columnist, Amy Gietzen, 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.