Patients in interview study talk of the various life changes they have to confront by Marisa Wexler, MS | January 23, 2024
Living with scleroderma requires adapting to changes in a woman’s sense of self, but practicing gratitude and accepting change can help patients reclaim themselves, a study aiming for a “grounded theory” of identify management reports.
Its scientists said these findings may lay the groundwork for future studies aiming to develop interventions to help people with scleroderma hold on to their sense of self while navigating life with the progressive disease.
The study, “Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women,” was published in the Western Journal of Nursing Research.
A columnist praises her husband's approach to being a spouse caregiver by Lisa Weber
We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise is nearly impossible. Ross endured a week of grilling questions and still kept the itinerary under lock and key.
Although it was a beautiful night, we had to accommodate my blue-toned hands, a result of Raynaud’s, and sit indoors. But we moved forward with the evening and didn’t pay my disease much attention. And even when my gastroparesis limited my options on the menu, we chose to ignore it for the night and focus only on the happy memories we’ve built together.
I even drank wine without worrying about the insufferable inflammation it would cause the next day. Because every now and then, it helps to take a vacation day from scleroderma.
Overwhelmed Columnist Amy Gietzen struggles with a slew of mysterious symptoms
A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly.
When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold waves of water, leaving me numb and frozen with shock. I felt like I’d never be able to cope.
For years I put on a brave face. I put my head down and did the work, always trying to be proactive and positive in the face of scleroderma. But I still felt like I was moving further and further away from my goal of stabilizing my symptoms. When would all of my hard work, dedication, and treatment compliance pay off?
Body betrayal is a common experience among people with chronic illness by Amy Gietzen from Scleroderma News
After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?”
While many of the feelings I experienced are hard to describe and identify, I vividly remember the feeling of betrayal coursing through my veins for months after my diagnosis.
Because scleroderma can affect people in so many different ways, and because symptoms can ebb and flow and change over time, it can be easy to think that your body is out to get you. For me, it felt like my body was betraying my trust in it.
I can’t recall a time since my diagnosis that I wasn’t in pain or, at the very least, uncomfortable with the changes I was experiencing. In my first few years with scleroderma, I felt like I had no control over what was happening to me. At any given time, my hands would cramp, my muscles would stiffen and tense, and my skin would itch so intensely that I needed to ice it with cold packs.
Columnist Amy Gietzen (Scleroderma News) isn't always honest about her scleroderma symptoms
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable.
But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times I’ve plastered a smile on my face and pretended everything was fine when, in reality, I felt far from OK.
Why do I do that? Why do I feel the need to put on a brave face and ignore what’s happening in my body and mind? Why is it more comfortable to lie instead of owning my truth — the painful, the stressful, and the miserable?
Lying to doctors
I discovered early on in my diagnosis that no medication or treatment could alleviate my symptoms completely. On good days, some of the pain and discomfort subsided, but on the worst days, the treatments would barely touch the physical discomfort traveling up and down my body.
I’d leave appointments so disappointed not to have a permanent solution to my ulcerated sores or itchy skin. Over time, I built up armor to shield me from the letdowns until I eventually became emotionally numb to the physical pain.
It seemed pointless to be honest with my doctors. Looking them in the eye and telling a bald-faced lie about how I felt quickly became second nature.
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.
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.
A columnist describes one of the many ways the disease changed her life by Amy Gietzen
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.
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.
Scleroderma Queensland Support Group