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.

 ​When I'm frustrated with myself and my body, I see my biases at work - by Lisa Weber from Scleroderma News

I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done.
It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough to complete certain tasks. And if I push past the pain and exhaustion, I risk a major flare-up with unrelenting inflammation and fatigue.
So I did what was best for my body. I tapped out and crawled out of the bathroom. I managed enough strength to plop myself on my bed to rest and brainstorm a solution. Failure only happens if I quit!
​Finding tools to adapt to my limitations
​Did you know the internet has a wealth of results for the search “disabled cleaning tools”? Accepting disabilities caused by my scleroderma doesn’t make me weak. Strategically planning ways to stay independent gives me power over my shortcomings. It takes emotional strength to be unstoppable, and that’s what I strive for each day.
One search turned up a power scrubbing brush, a hand-held pole with a spinning brush to make scrubbing surfaces easier. I was so excited about this new purchase and couldn’t wait to clean the rest of my shower with no effort!
And when that box showed up on my doorstep, I acted like a kid on Christmas morning. I tore open my package, gave it a full charge, and dashed straight to the bathroom to test it.
It started out fantastic! Cleaning bubbles coated each tile, and the brush spun around like helicopter blades. I could clean all day with this nifty tool! I even imagined my future self sipping a glass of wine while nonchalantly moving the pole around.
But there was one problem: The motor died before the last wall was finished. Perhaps I received a defective product? Perhaps my definition of “clean” is too exhausting for any tool or person in this world? I’ll definitely try another brand before giving up, but this experience taught me an important lesson.

How to cope when even a well-meaning phrase can cut daggers by Amy Gietzen from Scleroderma News

“Wow, you were just discharged from the hospital? You look healthy to me.”
I can’t remember a time when words have hurt me more.

According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as that statistic may be, chronic illness, especially scleroderma, tends to create an extremely isolating way of life.

Scleroderma has a way of singling you out, maybe because no case of scleroderma is like another. This uniqueness can include symptoms both usual and unusual, and some of them are invisible to an onlooker. This leads to misconceptions about our physical complaints, one of the more upsetting aspects of living with scleroderma.
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These misconceptions are often packaged in scornful condemnations and accusatory statements of laziness, forgetfulness, or well-meaning ignorance. The reality is that just because we look OK, it doesn’t mean we are OK — physically or emotionally.

As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might offer.

Many adults are probably excited to ring in the new year in style by going out on the town or enjoying a few drinks with friends. Sometimes I envy people who can spend a fortune on lavish outfits and expensive bottles of Champagne, and eat filet mignon and lobster tail in celebration. I long for the days when my only problem was deciding what to wear when I went out at night.

The last time I went out for New Year’s Eve, I was 20 years old. At that point, I had recently been diagnosed with scleroderma and was in denial about my disease. So I behaved as if I were unaffected by symptoms, brushing aside the pain and discomfort and forcing my body to continue as normal.
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I made plans to go out with close friends to celebrate at a local bar. Sounds normal, right? Unfortunately, my evening was anything but normal. I ended up getting sick after one sip of my cocktail and had to leave immediately. I became sick several times on the drive home and had to pull over to vomit.
I couldn’t understand what was wrong with me. In my mind, I was fine, when in reality, I was having a serious scleroderma flare-up.

A dash of humor often helps me get the reaction I want from concerned others by Lisa Weber

Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it.
I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the situation so I don’t become the equivalent of the lights going out at a party.
Having become a pro at living with pain and limitations, I’ve learned that if I share why I can’t do something, people understand. But they also show pity — which makes me feel even worse!
I discovered that if I use colorful, silly descriptions to share the why behind my limitation, I cushion the negative impact it has on the company I’m with.

Explanations require careful thought
My husband and kids were so excited to be at the Tampa Bay Lightning hockey game. We walked endlessly around Amalie Arena looking for an elevator to take my broken lungs to the top floor. With the game about to start, I could see their excitement shifting to frustration.
My youngest sighed and said, “Can’t we just take the stairs?” I know I should’ve taken a moment to explain how that could backfire, but I have a toxic trait: I think I can overcome any challenge.
Without hesitation, I turned toward the stairwell and braced myself mentally for the battle ahead. My husband sounded the alarms and did his best to discourage me. But stubbornness is my other toxic trait.
I made it up the first flight of 30 to 40 steps, but it didn’t feel good: burning lungs, pounding heart, shock waves of pain, as well as complete disorientation while my vision spun around and around.
It was no surprise that I needed to take a break. Without question, my family huddled around me while I leaned against the wall in full concentration, practicing mind control so I wouldn’t panic.
“Are you ready, Mom?” my teenage daughter asked, with anxiety in her voice.
Here’s where I could’ve said, “I just need another minute.” But if I know teen girls, I’d probably get a quick eye roll. And if I shared the truth, “I just need a minute or I’m going to pass out,” I’d get those uncomfortable, concerned looks of worry.

All the bedroom doors were closed and everyone was tucked in under their warm comforters. Except for me. I had taken on the 2013 holiday season like it was another full-time job. Without enough daylight hours to squeeze it all in, I was working the graveyard shift and bleeding myself dry.

For a long time, I evaluated my value based on how much I could accomplish for myself and others. Acts of service, checked boxes on task lists … but there’s a trap to this method of pleasing people.
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I didn’t want to say no! I accepted every invitation. I committed to every cookie party, holiday light festival, and gift exchange. I didn’t want my kids to miss out, and I certainly didn’t want to let down friends and family.

The word “mortality” has ping-ponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades.

As a teenager, living with scleroderma made me angry. I bottled up all of my rage-induced emotions so I could fight for my life and find adequate medical care. Nothing I went through during those years was straightforward. My life then seemed out of control and forever changed. I had to sift through granules of emotional sand to find balance, and all the while my mortality was a specter in the distance, watching intently.
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I lived out my turbulent 20s juggling work, school, and scleroderma. Each day one would outweigh the other until eventually, I lost my rhythm. Nursing school was my happy place, and even though I was in constant pain from lifting patients and making hospital beds, I loved every minute of honing my craft.

For some scleroderma patients, loss of sleep and fatigue are significant issues. Trying to manage a barrage of symptoms while exhausted is a tiring game of cat and mouse.

Fortunately, until recently, I had only experienced fatigue in small doses. The occasional nap or sleepless night was all that rattled my routine. It wasn’t until I was diagnosed with heart failure in 2020 that I realized that sleep plays an essential role in my disease management.
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When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake.

Within seconds, my upper legs were covered in fire ants. The tiny monsters went straight to work injecting their venom. No matter how fast I swiped them off, they had already left behind burning bites all over the back of my legs and up to my lower back.

​Once I was finally rid of them, I made my second mistake: I scratched the burning itchiness that had spread across my skin. That was a quick lesson: The scratching only exacerbated the problem and made it last longer.

Chronic stress can lead to many physical and emotional issues, such as anxiety, high blood pressure, stomach ulcers, and heart attacks. For many people with autoimmune diseases, stress causes a ton of complications and exacerbates symptoms.
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This is also true for those of us with scleroderma, as stress can result in a Raynaud’s phenomenon flare-up, heart palpitations, anxiety, or stomach issues. Mostly, it makes the painful symptoms we already endure worse, and it might even cause new issues to arise.