When Looks Deceive: The Reality of Invisible Illness
Imagine a life filled with chronic pain, fatigue, and a constant battle within your own body. Yet, to the outside world, you appear perfectly healthy. This is the reality for millions living with invisible illnesses, a spectrum of conditions like Sjogren’s syndrome that lack outward signs but significantly impact daily life. Sjogren’s is just one example of the many invisible illnesses that can make daily tasks a challenge.
My story exemplifies these challenges. 2014 was a year of devastating loss and medical crisis. Caring for my terminally ill mother took an immense physical and emotional toll. Shortly after her passing, I began experiencing excruciating pain in my leg and knee. Despite repeated visits to my doctor, my concerns were dismissed as anxiety.
However, I knew something wasn’t right. The pain intensified, and by the time I was scheduled for an ultrasound, the situation became critical. The agonizing pain and worsening condition led me to rush to the emergency room, where I received a shocking diagnosis: deep vein thrombosis (DVTS) and bilateral pulmonary embolisms. The doctors informed me that without immediate intervention, I wouldn’t have survived.
The aftermath was a blur of appointments, scans, and new medical conditions, likely exacerbated by the excessive radiation from CT scans. Surviving the clots wasn’t the end of the story. The experience triggered PTSD, and I developed autoimmune diseases that I didn’t have before. For the last 10 years, I’ve navigated a life filled with unseen pain and fatigue.
Breaking the Silence: Finding Strength in Shared Experiences
Living with an invisible illness can be isolating. Yet, there is strength in numbers. Here are some credible organizations that offer support, information, and a sense of community:
- The Mighty (https://themighty.com/): This website features personal stories, inspirational articles, and resources specifically for those with chronic illnesses, including invisible illnesses.
- The National Alliance on Mental Illness (NAMI) (https://www.nami.org/): NAMI provides valuable resources for mental health conditions, which often co-occur with invisible physical illnesses.
- The American Chronic Pain Association (ACPA) (https://www.acpanow.com/): The ACPA offers information and support for various chronic pain conditions.
- The Invisible Disabilities Association (IDA) (https://invisibledisabilities.org/): This organization advocates for the rights of those with invisible disabilities and provides resources for navigating daily life.
- The Sjögren’s Foundation: (https://sjogrens.org/) This foundation is a leading source of information and support for people with Sjogren’s.
Beyond resources, I’ve found immense strength through delving into the world of invisible illnesses. Researching my conditions and listening to podcasts by others battling similar challenges, like Messy by Christina Applegate and Jamie-Lynn Sigler, has been a source of knowledge and belonging. Hearing their stories has empowered me to express myself and seek help, because it’s okay not to be okay. 
My Toolkit for Managing an Invisible Illness
Living well with an invisible illness takes perseverance, but there is hope. Here are some strategies that have helped me manage my condition:
- Open Communication: Talking openly about how I’m feeling with loved ones and a therapist has been incredibly helpful.
- Empowered Research: Researching my conditions has empowered me to make informed decisions about my care.
- Healthy Habits: Focusing on healthy eating habits provides my body with the fuel it needs.
- Prioritizing Joy: I prioritize activities that bring me joy, such as taking up a long-desired hobby, writing, and nurturing my inner child.
Empowering Yourself: A Brighter Future
You are not alone. By learning more about your condition (see resources above), connecting with others who understand, advocating for your needs, and incorporating strategies that work for you, you can empower yourself to manage your illness and live a fulfilling life. Let’s break down the walls of invisibility and create a space where everyone feels supported and understood.
Additional Resources:
- Stop the Clot: This website from the National Heart, Lung, and Blood Institute provides information about blood clots (https://www.cdc.gov/ncbddd/dvt/stop-the-clot-resource-toolkit.html)
- Multiple Sclerosis Foundation: The Multiple Sclerosis Foundation is a leading source of information and support for people with MS (https://msfocus.org/)
- Lupus Foundation of America: The Lupus Foundation of America is dedicated to improving the lives of people with lupus (https://www.lupus.org/)
- National Alliance on Mental Illness (NAMI) Depression Page: This specific page focuses on depression, including symptoms, diagnosis, treatment, and support. (https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/depression)
Remember, trust your body and don’t hesitate to seek a second opinion if you feel your concerns aren’t being heard. You are your strongest advocate.
Sharing Your Story: The Ripple Effect of Hope
There’s immense power in sharing your story. It can inspire others facing similar challenges, letting them know they are not alone. It can also raise awareness and create a more empathetic world for everyone living with invisible illnesses. So, I encourage you to reach out, connect with others, and share your journey.
Together, we can break down the walls of invisibility and build a future where everyone feels seen, understood, and empowered to live their best life, regardless of their health challenges.
Looking for a Realtor® who understands facing challenges?
Renee Porsia (DRE: 02089383) is The Rescue Dog Realtor® with Realty One Group West in Laguna Niguel, CA. Servicing Orange County, CA. Her passion for helping others extends to her work in real estate, where she strives to make the home buying or selling process as smooth and stress-free as possible. Every sale helps rescue dogs! Learn more about her work and how every sale helps rescue dogs at reneeporsia.com.
