Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support
A fellow rare caregiver: “I am struggling a lot with feelings of isolation. The sad truth is that I shared my heart with those closest to me and just came away feeling even more alone. They had the best of intentions but nobody yet is supporting me in the way I need. Should I just stop looking for help? Maybe I would be better off that way?”
Becky’s response: I want to start by saying that when the unthinkable happens and your whole world feels turned upside down, it is totally natural to need someone by your side. When what you see up ahead feels way too enormous and scary to manage by yourself, it can leave you feeling lonely and vulnerable. There can be a lot of trial and error involved before you finally find the one who finally hears you and tells you those words you long to hear.
It is okay to feel it, ALL of it, to dive right into the good, the bad, and the ugly of what you are going through. Accept with love for yourself that it is all a natural part of the process on your journey. To healing, growth, and acceptance.
“When we decide at our very weakest points to be strong, to keep putting our feet on the floor every morning, and stand tall to face another day, we become the hero of our story.”
I think the key word here is acceptance as you cannot process what you don't accept as part of your story. I had to accept the heavy, painful, tearful weight of guilt I carried as a result of passing on a rare syndrome to two of my three beautiful children. Through acceptance, I could become the hero of my own story. Compassionate insights from a genetics counselor were extremely helpful for me. She gave me permission to feel and accept the dark depths of my raw emotions, my guilt, and my trauma; and, with acceptance was healing, from which I rose with an inner strength that I never knew existed. It was always laying dormant within me, I had just never had life shake me up enough to need to use it. When we decide at our very weakest points to be strong, to keep putting our feet on the floor every morning, and to stand tall to face another day, we become the hero of our story. That is a gift we can only give ourselves and our rare and wonderful children who need us most.
The most important people you can meet in this life are not the ones who make it all feel better at the moment. Instead, the ones that serve as a powerful reminder that you already have it within you to be who both you and your family need to thrive. By embracing and living the real truth about yourself and fully exploring all you can become, you will see that you are the constant companion you need most. Not only that, you will find those genuine friendships and connections that you longed for. You will find people that are able to relate and connect to the real you and meet you where you are at. You and your family are never completely alone on your rare journey as long as you truly have your own love and support. Not only that, but the wonderful, memorable one-of-a-kind, diamonds in the dirt, rare partners who soon teach you that you are so much more capable than the person you once were.
Your tribe is out there and only the raw truth of who you are will draw them to you. Dare to speak your truth and share your story, as in doing so lonely isolation will be replaced with authentic connection and you can be the voice reminding someone else in their darkest times, that they too are never alone.
Becky shares her experience living with and parenting kids with Koolen-de Vries Syndrome. Click here to access the full article!
Latest From Know Rare
Discover the latest treatments for IgA Nephropathy (IgAN), a rare kidney disease. Learn how current medications and emerging therapies work to slow progression, reduce proteinuria, and protect kidney function.
Discover how patient education empowers individuals with rare diseases to better understand their diagnosis, make informed decisions, and actively participate in their treatment plans. Learn why clear, compassionate communication is key to improving outcomes in rare disease care.
A heartfelt mother’s account on five years of navigating pediatric specialist waiting rooms with her medically complex child.
A powerful personal journey through Koolen-de Vries syndrome, ADHD, and neurodivergent parenting. Discover how one mother turned diagnosis into empowerment, embracing difference, healing guilt, and raising resilient, remarkable children in a world that doesn’t always understand.
Toni Roberts lives with Epidermolysis Bullosa, a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering and tearing. Toni’s condition profoundly impacted her older sister, Cady Ward. Witnessing Toni’s daily struggles and challenges, Cady was inspired to become an advocate for rare disease and take on an extraordinary challenge—run an ultra-marathon.
Dr. David Fajgenbaum was in his third year of medical school when a rare and mysterious illness derailed his plans. Crushing fatigue, abdominal pain, and multiple swollen lymph nodes progressed rapidly, and he found himself in the ICU with multiple system organ failure. Recovering from the brink of death, he was diagnosed with Castleman disease (CD), a rare condition that at the time was thought to be a lymph node disease with similarities to cancer.
Learn about Dr. Rohit Aggarwal’s efforts in creating more centers of excellence for myositis, as well as educating, empowering, and connecting patients to clinical trials.
Recognizing the need for an effective way to treat becker muscular dystrophy, researchers have been studying the cause of muscle loss, and ways to stop it from happening.
After his diagnosis of limb-girdle muscular dystrophy type 2B at age 21, Chris initially opted for a safe career path, choosing jobs with steady income, benefits, and predictability. However, this decision made him feel like something was missing. Find out how Chris was finally able to follow his heart, finding purpose and contentment in becoming a writer.
Learn more about CureGRIN, founded in 2018 by parents of children diagnosed with GRIN Disorder to help find cures and therapies for people around the world suffering from these conditions.
Learn about the incredible story of Edward Gent, a Sports Nutritionist diagnosed with MMN, who decided to create an app to help others worldwide with their disease and symptom management.
Find out about 7 research areas identified as priorities in Sickle Cell Research and about a sickle cell disease drug, which was originally approved for treatment, that has been taken off the market.
It’s no secret that it is difficult to get to a pain medicine specialist. There are just so many people in pain who cannot find relief, and are looking for help. Learn about Bliss Health, which provides access to pain management services through virtual consultations, through a dedicated team of medical professionals who specialize in the diagnosis, treatment, and ongoing management of various types of chronic and acute pain conditions.
There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.
If you are coming across high copays and struggling to afford your treatment plan, here are a few options that may help you reduce the costs of your medications.
At age 15, Becca Salky became her own medical detective, playing a key role in uncovering her diagnosis. Now, as a Clinical Research Coordinator at Massachusetts General Hospital, she focuses on spreading awareness about MOG, finding better diagnostic tools, leading clinical trials, and fighting gender disparity.
On the “Rare Insights” podcast we bridge the gap between those living with rare diseases and the biopharmaceutical industry.
Why Men’s Health Week (June 10-16) matters for the Rare Community, and how you can take part.
June is Pride Month, and at Know Rare, we are committed to celebrating the rich diversity within the rare disease community.
Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.
When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.
This summer, NMOSD and MOGAD patients, caregivers, clinicians, nurses, researchers, and advocates are invited to join The Sumaira Foundation at Emory for TSF's Atlanta Patient Day.
Know Rare writer Gina DeMillo Wagner’s new memoir, Forces of Nature explores powerful themes related to caregiving and rare disease.
Journalist Lindsay Guentzel offers an inside look at life with the rare muscular condition.
This May, Know Rare is shining a light on myositis, a group of rare autoimmune muscle diseases that can have profound effects on daily life. This is an important time for the myositis community and the rare disease community at large: a time to share stories from those living with the condition, share more information about the current state and future of the disease, and advocate for better treatments that will ultimately enhance the quality of life for those impacted by it. Whether you're a patient, caregiver, or advocate, join us in raising awareness and supporting those affected by myositis.
Author Chris Anselmo explains why being mindful of your pace can have major benefits for your health and well-being, and offers some tips to help.
