What I’ve Learned About Long-term Relationships and Chronic Illness

Loving relationships have unique challenges when scleroderma is in the mix

Amy Baker avatar

by Amy Baker |

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A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health.

Too often, the vows we speak to one another are taken for granted. We believe things will always be good, fair, and happy in a relationship. We all have our fairytale version of how a relationship should be.

But we learn that love is a verb, not a noun. Love is showing up every day for the other person. And relationships ebb and flow.

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Long-term relationships can be taxing, even in the best of circumstances. And life always has a way of throwing challenges in our laps, especially when we least expect them.

However, loving someone with scleroderma, or any other disease, presents unique challenges. When our health starts to falter, relationships are tested.

Another important relationship that wavers is the one we have with ourselves. When we receive a diagnosis of a rare, life-threatening, and confusing illness, it is devastating. It makes us question everything about our existence.

If we have a partner in our lives, we worry about the impact our disease will have on them. Will they be able to handle the ups and downs that go along with managing a chronic illness? Will they want to stick it out, even when things get bad?

Partners of people with chronic illness have their own unique challenges. We sometimes overlook their concerns because we are so focused on the whys, hows, and what-ifs of our disease. And as a result, our partners must often put their feelings aside. Understandably, their attention is directed toward our needs and emotional well-being.

So how can we help our partners empathize with us? Better yet, how can we empathize with our partners? These are hard questions to answer, and every relationship is unique. But I can share a few things that have worked for me.

First, I had to recognize that I was not my disease. I was diagnosed with an overwhelming illness.

Next, I learned to talk openly and honestly with the loved ones in my life. I found value in sharing my hopes and fears, and also those moments when I was feeling ill.

I took the time to grieve the old me. Partners of people with chronic illness also must take the time to grieve a loved one’s diagnosis, which will happen in different ways. Professional counseling helped me with this process. Personally, I find this aspect to be the most challenging.

Listening to my body is also important. Initially, after I was diagnosed, I found this hard to do. Talking with a partner about the high pain days is helpful, as is communicating what is feasible to do. A partner often must take charge in those situations, so it’s good to acknowledge when they do.

Finally, in a relationship, you have to make time for just the two of you. No, that doesn’t include going to doctor appointments together. It means making it a point to spend time alone together without talking about the disease.

What are some of your tips to maintaining a healthy relationship while managing a chronic illness? Please share in the comments below. 

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.




Very important points.
Thank you, Amy!


Margaret avatar


Thank you Amy for your very relevant thoughts. Most of us are in some kind of relationship, and suggestions/advice on how to cope never go astray. I was older than most scleroderma travellers - diagnosed with rapid onset SSc at 70, three years ago. My husband and I have battled with “thinking positive” - ie pretending not to be angry and fearful, or crying on one another’s shoulders. But you have reminded me that I need to be more open within him, and encourage him to let his feelings out.
A question - how do you allow a very sensitive adult child to be involved? My daughter is married, so she doesn't necessarily see all that SSc is doing to me. However she probably sees and knows much moire than in imagine.


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