Patients in racial minority groups found to be more dissatisfied with their lives by Patricia Inácio, PhD of Scleroderma News More than 30% of people with systemic sclerosis (SSc) are dissatisfied with their lives, and higher levels of dissatisfaction are reported by racial minority groups, a U.S.-based study has found.
The spiritual well-being of patients was the strongest contributor to life satisfaction scores. These scores were found to be significantly lower for Black, Asian, American Indian, and Alaska Native patients. “Spiritual well-being is particularly important in understanding life satisfaction in people with systemic sclerosis,” researchers wrote, adding that this should prompt further research to “assess and examine spiritual well-being and its impact on life satisfaction in a larger and more diverse systemic sclerosis sample.” The study, “Factors associated with life satisfaction in systemic sclerosis: Examining the moderating roles of social support and spiritual well-being,” was published in the Journal of Scleroderma and Related Disorders. Life satisfaction often reflects mental health status SSc, also known as scleroderma, is a chronic autoimmune condition that causes inflammation and fibrosis (scarring) of the skin, but it can also affect internal organs. Symptoms can include joint pain, fatigue, and gastrointestinal problems — all of which increase functional limitations and affect quality of life. Life satisfaction, a parameter that reflects how people evaluate their lives as a whole, is one of the tools for assessing quality of life. Life satisfaction often reflects mental health status and has been associated with mortality risk. However, few studies have addressed life satisfaction of SSc patients. Prior research has indicated that social support is important to help people with SSc cope with disease-related challenges, and that spiritual well-being has a positive impact on their perception of well-being. To understand the effects of spiritual well-being, integrated with social support and functional limitations, a team of researchers in the U.S. analyzed data from the University of California Los Angeles Scleroderma Quality of Life Study. SSc patients, 18 and older, completed questionnaires about their demographics, symptoms of depression, functional limitations, social support, and spiritual well-being. Functional limitations, social support, and especially spiritual well-being are all associated with subjective well-being in people with SSc. 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. Sometimes we push ourselves so hard we lose sight of what's important - By Lisa Weber 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. 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. Budgeting and planning ahead are key for columnist Amy Gietzen It’s beginning to look an awful lot like the holidays! Everywhere I go I see festive decor and signs for holiday sales. I guess I shouldn’t be surprised to hear ”Jingle Bells” and ”White Christmas” on the radio in November.
The hustle and bustle of the season often brings long lines, high-calorie meals, delicious desserts, and, most importantly, the exchanging of gifts. I love the tradition of gift-giving and the smiles it brings to the faces of my close friends and loved ones. Seeing the excitement that glows on my niece’s face as she tears through sparkling paper and ribbons is priceless. However, what’s hard for me is the cost of those lovely gifts. I always wonder how I will survive the holidays and afford presents on my income. After confronting it in my teens, I'm coming to terms with it at 40 by Amy Gietzen 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. 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. |
AuthorScleroderma Queensland Support Group Archives
May 2024
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