The Challenges of Dating With Scleroderma

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by Amy Baker |

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Dating in general is hard. You swipe right, swipe left, move up and down, or something like that. Maybe you even do the hokeypokey. And online dating? No way, no how.

Dating with a chronic illness like scleroderma is exponentially more challenging and terrifying. It’s like going to a carnival and getting stuck in the fun house. Everyone else seems to be enjoying themselves, but then there’s me, running up and down, and getting lost at every turn. How do I find my way out?

Those of us with chronic illness have to decide whether to disclose our condition early on. Some of us may not want to be forthcoming, for fear of rejection.

Being diagnosed when I was married was heartbreaking for me. I remember feeling insanely guilty and thinking that my husband hadn’t signed up for this new me. He had bought a brand-new, reliable car — not one that would fall under lemon laws.

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As more diagnoses rolled in, my self-worth slipped away, and depression set in. How could I be the wife I had promised to be? My body betrayed me, and now I felt like I was betraying others.

My illness took a toll on my marriage. Many things can put pressure on a relationship, and health issues are certainly at the top of the list. I hated feeling like I wasn’t able to be a good spouse. My fatigue was just so overwhelming. I didn’t know how to articulate the guilt I felt.

This played a massive role in my depression and anxiety. I was angry at my body, so I tried to hide how bad I felt. Constantly putting on a happy face for everyone was exhausting. I was worried about being a burden, especially on those who loved me, as chronic illness not only affects us, but the people around us. So, I withdrew from everyone.

Fast-forward a couple of years, and I am now living a single life as a chronic illness patient. I never envisioned this, and it is terrifying.

Although I am technically back in the dating pool, I haven’t started seeing people. I’ve received invites, but can’t follow through. How do you tell someone who’s interested in you that you have multiple chronic illnesses? And when is the appropriate time to tell them? I want to be open and honest, but I don’t want to push people away, either. I worry that others won’t want to live with a partner who has a debilitating condition.

It’s hard for me to think about opening up to a potential partner, as I know these conversations won’t be easy.

I don’t want to live my life alone. I need to find a way to tell people about my health while letting them know it doesn’t define me. I miss cuddling and feeling safe with someone.

Dating with scleroderma is truly a whole new world.

Do you have any tips for dating with scleroderma? Please share in the comments below.

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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.

Comments

Hyman baker avatar

Hyman baker

My wife died of scleroderma , never once did it effect how I felt . I considered it a honor helping her . Don’t be afraid of telling someone of your illness . If they don’t show you the love that you deserve , they are not worth being with you.

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Ron Sasso avatar

Ron Sasso

Reading your blog was all too familiar to me. I had been married for over 25 years when I got diagnosed with systemic scleroderma. Given my age, gender and antibodies (male, over age 50, scl-70 positive), I was in a group that had a 50% that I wouldn't be around in five years. Prior to my diagnosis, I had an extremely stressful year (off the charts). My marriage wasn't great for a while---but this showed me how bad it really was. Crisis can bring out the best or the worst in people. My wife's first response was that I needed more life insurance. Thank you, dear...

I was the bread-winner and was failing at my role because fatigue was wiping me out. Depression hit as well. I stayed active and I continued doing surprisingly well health wise. I even got approved for another life insurance policy (I already had one policy---but that wasn't enough)!

I have done amazingly well. I left my wife after six months of her ignoring me (I found out years later she had met someone then). Got divorced while managing stress. Decided to take some time to myself before trying to date for the first time in nearly 30 years...a year would be good...

Then 2020 and the pandemic. Great timing! I started the dating websites. Here's where I get to answer your questions...

I am a runner and in very good health. I have no real visible skin involvement. I work in real estate and I am on disability. I often would tell people that I work on real estate. I wouldn't jump in a let people know about my scleroderma right away. Sometimes it didn't matter when I told them...they would ghost me. I would estimate about 2/3 of the women would.

I found that is is much better to tell someone the reality of scleroderma when meeting face to face. I had a luncheon with one very nice woman. As we were walking out to my car, she asked me, "Uhm, so what's your prognosis?" I thought for a moment...and then told her wryly, "I think I'll make it to the car." I got playfully hit for that! I used it again in a similar situation with another woman I had met, and---I got playfully hit again! I assume that I must be doing something right.

After that I explain that things are constantly changing. Life expectancy is improving. Managing stress is critical. Things must be done differently...but...I also value life far more. The idea that life is short and is to be enjoyed is critical. Most people don't get that. To me, that is one of those odd blessings that a chronic illness can give you. I enjoy the smell of the rain far more than I ever did. Of course, I believe that I will live as long as God lets me live---and I think it will be for a while. But, I can also be hit by a truck tomorrow. Spin your scleroderma as positively as you can. You are a survivor and a warrior! It took me over five years to realize that there are positive things that I got out of scleroderma (lots of negatives, but don't focus on those). It is a part of you and you should love yourself, so you should love that part of you---even as annoying and painful as it may be.

The reality is that no one knows when they will die or what will happen tomorrow. One day at a time. From my limited experience, I would recommend letting people know when you meet them---unless they are at a distance and you have to coordinate to get together. Then let them know before a trip. I saved myself some time and money that way! My hunch is that most people have a skeleton in the closet---whether or not it's chronic illness or a character flaw. Know who you are. Be patient. Stranger things can happen in life when you least expect them....

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Amy Houston avatar

Amy Houston

I hate to say this but I believe you are the exception. My husband left after 22 years and he knew going in that I had scleroderma. I made it very clear because I didn’t want to be a burden. He left without giving me any chance to even address concerns or make changes.
Living alone with a chronic illness can be terrifying but worst of all is losing the security of your best friend.

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Amy Baker avatar

Amy Baker

We are divorced. I can't even imagine being in the dating scene, but here I am. I think it's a huge challenge - mainly because many of us are private in our disease process. I am very sorry you had to experience a "living loss." That's what I call them when we lose someone we love that is still alive. I hope you have a strong support system to help you when you are feeling alone. It has helped me!

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