The Invisible Boundaries: My Life with Chronic Conditions

 

Living with genetic conditions like Dyskeratosis congenita, Ehlers-Danlos Syndrome (EDS), and comorbidities like Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) means my world is mostly confined to the four walls of my room. Most days, I navigate a world that moves at a pace dictated not by me, but by the limitations of my body and the availability of those around me.

Disclaimer: Please note that the experiences and thoughts shared here are my own and do not represent the full spectrum of experiences for all housebound or disabled individuals.

CW: Infertility

The Invisible Bars of Disability

My daily life resembles solitary confinement, not by choice but by circumstance. The bars are invisible — symptoms of disorders that many can’t see or fully understand. This confinement is not just physical; it affects my emotional and mental well-being, leading to a profound sense of isolation. I’m stuck, relying on a medical system that often feels as though it’s playing a game of tag, with no one willing to take full responsibility for my care. Understanding this, it becomes clear why even small interactions mean so much.

A Mental Prison: Navigating Cognitive Challenges

In addition to physical limitations, my conditions create a sort of mental prison. Brain fog and cognitive issues frequently cloud my thinking, making it difficult to communicate, process information, or even engage in simple daily tasks. This cognitive fog intensifies my isolation, as it not only separates me from physical activities but also from engaging fully in conversations and social interactions, further imprisoning me within my own mind. These challenges underscore the importance of the mental health resources I discuss later.

Window Shopping Through Life

Life often feels like window shopping. Whether I’m scrolling through social media or observing the everyday activities of those around me, I watch others experiencing milestones and adventures that remain just out of my reach. This sensation is especially poignant when it comes to family life, something I deeply yearn for but cannot have due to my conditions and infertility. It’s not just about missing out on being a mother; it’s about watching life pass by — a life I’m not able to participate in fully. I see my younger brother, cousins, and even strangers reaching life milestones that are unattainable for me, like marriage and starting a family. Observing these moments feels like looking into a store I can never enter, seeing a world of possibilities that are closed off to me.

The Essential Role of Delivery Services: Key Areas of Support for Housebound Individuals.

For many like me, services like DoorDash, Amazon, and others are not mere conveniences or luxuries; they are essential lifelines that enable us to maintain independence and manage our daily lives. These services are critical for accessing food, medicine, and other necessities when leaving the house is not an option. As an example, being able to order groceries online and have them delivered to my doorstep has been a game-changer in maintaining my independence.

To help those who might benefit, here is a link for individuals on certain government assistance programs to get a discount on delivery Services and more

The Bitter-Sweetness of Online Realities

The internet is a lifeline, providing entertainment, social connections, and information that are otherwise out of reach. While different from face-to-face connections, online interactions are incredibly valuable and real. For many of us, the digital world is our primary mode of human connection, offering a sense of community and support that is vital to our well-being.

Understanding the Meaning of Being Housebound

Being housebound means that an individual’s ability to leave their home is significantly restricted due to physical or mental health conditions. It’s important to understand that this term exists on a spectrum. For some, being housebound might mean they can occasionally leave their house for medical appointments or brief outings, while for others, it may mean they are unable to leave their home at all. What’s important to understand is that being housebound is about the ability to easily and safely leave one’s house without assistance from people and/or medical devices.

In simple terms, being housebound means that leaving home is very difficult and often requires significant effort or assistance. Because of this, we generally don’t leave our homes. This situation is usually due to chronic illness, disability, or other serious health conditions.

For those with chronic illnesses like Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS), being housebound can vary day-to-day. Some days might allow for a short trip outside, while others might require complete rest at home. The variability and unpredictability are part of what makes managing these conditions so challenging.

It’s also crucial to note that being housebound does not necessarily mean a person is bedbound. While we may spend a lot of time resting, we can often move around within our home and engage in various activities that are manageable for us.

Understanding this spectrum helps in recognizing that being housebound is not a one-size-fits-all experience and underscores the importance of personalized care and support.

Advice for the Housebound and Their Loved Ones

For those sharing this journey, find a therapist who understands chronic illnesses and can navigate the mental toll of being housebound. Look for online communities, virtual hangout groups, or body-doubling groups that can offer support and companionship through screens. For our loved ones and allies, understand that our needs and capabilities can vary widely — we may be housebound, but we are not without hope or desire for engagement.

Make and keep a list of activities that can help pass the time and cope with boredom. Keeping a list of movies, TV shows, books, podcasts, and journals of what you are watching, reading, etc., and what you want to watch and read, can be very helpful. Documenting your thoughts provides a sense of accomplishment and enhances the experience, making it more than just a TV show or book. It creates a record of what you have done, how you felt about it, and can be very rewarding during times when it feels like you haven’t done anything.

Journaling can also give you a sense of talking to someone, and it doesn’t have to be written. Video and audio diaries are excellent options too. For a structured way to keep track of these activities, you can use my free  Notion template Comfortable Living Library. 

Remember, anything worth doing is worth doing poorly. It’s okay if things aren’t perfect; what matters is that you keep trying and engaging with the world around you in whatever ways you can.

We celebrate every small victory because each one is a triumph over our conditions. Each moment outside, each interaction, each day we manage to smile — these are victories, and they are monumental.

Join the Conversation

Living with chronic illnesses and disabilities can sometimes feel isolating, but it doesn’t have to be a journey we make alone. I invite you, my readers, to share your own experiences, tips, tricks, and resources in the comments below. Your insights can significantly enhance the support network for housebound individuals. Whether it’s a coping mechanism, a favorite online community, a helpful app, or just some words of encouragement, your contributions can make a real difference. Let’s build a repository of support and knowledge together, helping each other navigate the challenges and celebrate the victories, no matter how small. Together, we can create a space of understanding and empowerment. I look forward to reading your stories and learning from your insights!