A Certified Caregiving Consultant’s Reflections on Journaling
By Laura Will
Journaling: “You don’t have to leave the house. You can do it anytime. It doesn’t have to be perfect. It doesn’t even need sentence structure. It’s just your thoughts.” - Louisa Stringer, a certified caregiving consultant
Louisa Stringer is a compassionate individual, touched by a rare disease, who has crafted a creative, meaningful, and important career around supporting caregivers. Caregiving is inherent to the experience of motherhood; but when her youngest daughter was diagnosed with a rare cancer at the age of four, she quickly learned that “being a mother of a rare kid adds a whole other spectrum of care.”
As she and her family’s life recalibrated to the emotional realities and caregiving demands of pediatric cancer, Louisa both experienced and witnessed the emotional strains and time constraints between all the relationships within the family. Her relationship with her older, healthy children changed because of their sister, in unanticipated and sometimes unwanted ways. The complex impact on the caregiver and family unit became an area of personal exploration and professional interest; and as she connected with others, she “started to resonate with them as they told their caregiving stories.”
When speaking with Louisa, one thing becomes exceedingly clear: she loves listening and witnessing another’s story. In the narrative of disease, the person who is undergoing treatment is often considered the protagonist. But Louisa honors the story of the caregiver, a story that is often undervalued or overlooked by even caregivers themselves. Her attention and insights allow caregivers to feel more supported and less isolated.
“…journaling is a ‘tangible release.’”
This spring Louisa is focusing her expertise and love of storytelling into a new project, a weekly journaling workshop. She finds journaling is a “tangible release.” She knows it personally as a great tool, a helpful medium. Louisa explains that journaling can both process what is difficult or hurting, while also allowing the writer to honor and even craft their own narrative, referencing a Navajo proverb, “You create the world around you as you write.”
Journaling can be a habit, and “would be a good one for someone who thrives on routine.” But she feels strongly that journaling can be a very simple and quick act: “does not need to be a giant amount every day; it may just be a couple of words here and there.” If you do not feel like you have the time to use writing as a release, Louisa challenges us to think about how we choose to use our time. She says, “You do have five minutes in your day, I guarantee it,” and your story is worth it.
Louisa has a creative mind and enjoys similarly creative journaling prompts. She reflects that some of her favorite writing prompts are often just one word; currently, she has been journaling about the word ‘mercy.’ A good prompt has the potential to mentally uproot the caregiver out of the caregiving role, allowing them to explore what is true for them outside that role. Alternatively, journaling can be a place to process and track the needs of the caregiver. Both are available to the journaling caregiver at any given moment.
“How wonderful we are. How hurting we are. Journaling is not strenuous. So - write away!”
Links to other writings by Louisa:
Caregiving.com, Endurance: A Guide to Coping (December 2021)
Cape & Plymouth Business, The Importance of Being Present and Available (August 2021)
Caregiving.com, On Being Care-Full (May 2021)
MedicareAdvantage.com, Care for the Caregiver (February 2021)
Caregiving.com, A Caregiving Comfort: Control (June 2020)
Caregiving.com, 4 Essential Qualities of Women Caregivers (May 2020)
Caregiving.com, The Importance of Self-Awareness (May 2020)
Caregiving.com, Visionary Award Nominee: Louisa Stringer (February 2019)
Are you thinking about journaling? Make a free account on our website and start journaling today!
About Rare Resiliency:
Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.
Latest From Know Rare
From prenatal uncertainty and postpartum anxiety to therapy, grief, and hope, a mother shares her experience raising a child with a rare disease, navigating the healthcare system, finding community, and learning to embrace a different—but deeply meaningful—path as a parent.
A Danon disease study, led by researcher Dr. Barry Greenberg and published in the New England Journal of Medicine, wins an award! The study focuses on gene therapy as a potential treatment option for Danon disease. The study showed early signs that gene therapy may help the hearts of people with Danon disease.
A poster, presented at the European Hematology Association meeting in June, described a study that looked at tiredness (fatigue) in adults with immune thrombocytopenia (ITP). Researchers wanted to see if fatigue was related to bleeding or other health test results.
Lucky Shanmugan was recently featured in Porter Ranch Living, his local magazine, for Father’s Day: in his interview, Lucky talks about Osteogenesis Imperfecta, a rare genetic or heritable disorder of the connective tissue, and the incredible journey towards his official diagnosis.
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
A family’s hardships and resilience in finding answers and getting a diagnosis for their child, after numerous tests, brain biopsies, and hospitalizations. And the relief but also grief in finally putting a name to the rare disease that affects their child: BCL11B-related disorder.
The Danon Foundation boldly empowers people living with Danon disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources.
For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.
If you’ve been told you have seronegative NMOSD, there’s nearly 50/50 chance you have a different antibody causing your symptoms –MOG antibody.
Therapy Near Me is a nationwide mental health service based in Australia, providing easy access to psychologists, counsellors, behaviour support practitioners and social workers.
At the annual Kidney Week of the American Society of Nephrologists (ASN), the world’s largest kidney healthcare professional organization, new advances in research were highlighted. Over $35 million has been invested in research with the ASN, and there are many treatments in development for IgA Nephropathy (IgAN), with researchers actively investigating more than 20 different drugs.
When I was diagnosed with celiac disease, I thought avoiding bread and pasta would be enough. I quickly learned that living truly gluten-free is far more complex, and I'm sharing my experience to help newly diagnosed individuals understand what lies ahead.
Retinopathy is an eye problem that many people with Danon disease have. It can cause dark spots in the outer part of the eye, blurry or worse vision, and unusual test results on an eye exam. Sometimes these eye changes show up before heart problems, so an eye check can help find the disease early.
A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.
Kaya Girl Legacy, Inc. is a Florida-based nonprofit founded in memory of Kaya Humbert, a beautiful baby girl born with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), one of 46 known cases worldwide. The foundation is dedicated to empowering families with knowledge about their genetic health and advocating for early access to genetic testing and rare disease awareness.
A prose poem by Jim Kuhn, a rare warrior living with Sarcoidosis, a rare inflammatory disease.
Rare Mom Laura shares how her family’s prep for Halloween turned into a burst of familial love and creativity, as they all worked together in designing and building a costume for Alden, her medically complex son.
Instead of starting with a newly discovered drug compound, PCOR is a type of research that starts by turning to patients and caregivers and asking, What matters most to you? What questions do we want answered? What symptoms do we wish were better managed? What keeps us up at night?
Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.
Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue.
Why is it so hard to accept help? Humans often associate help with weakness and loss of independence and control. However, if we reframe our thoughts, accepting help can be viewed as a form of empowerment: showing vulnerability and trusting someone to help us requires great strength.
There is so much mental load with having a rare disease. Rare Human Lindsay shares there are things she does not care about anymore, as she manages rare disease symptoms, specialists, and clinical trials.
Rare Human Lindsay shares her "silver linings." It's not 'what doesn't kill you makes you stronger,' instead it's what doesn't kill you makes you braver. She shares that she has found deeper connections with others, improved her ability to ask for and accept help, and not been as afraid of the word "no."
Journalist and rare disease advocate Lindsay Guentzel breaks down why clinical trials are a lifeline for the rare disease community. With only 5% of known rare diseases having an FDA-approved therapy, trials often represent the only path toward treatment, progress, and hope.
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.
Laura Will
Laura is a mother, wife, friend, sister, and nurse. When part of her identity became the mother of a child with a life-limiting medical condition, poetry became a powerful outlet. Follow her journey at her website, www.adragonmomswords.com, or on her instagram Instagram @lauramonroewill #aldenanthonysmiles