What Home Means to Me as a Person With a Chronic Illness

From a young age, my parents made our home an oasis. My childhood house will always be a very special place to me, but it wasn’t so much the house itself. It’s what it represented.

It was a place of rest after an exhausting day of trying to maintain a happy demeanor through weakness and pain. Our walls were a judgment-free zone, where lying on the couch in a noticeably bad mood didn’t make me lazy or unfriendly. It was a sanctuary for healing when I felt broken and alone. A quote from one of my all-time favorite movies, “Under the Tuscan Sun,” sums it up perfectly: “What are four walls anyways? They are what they contain. The house protects the dreamer.” 

However, in their infinite wisdom, my parents never made our home a permanent escape. It wasn’t a place where I could hide or cower from the challenges of living with a chronic illness or just life in general. It wasn’t a place where the excuse of not participating would hold up. I was expected to engage fully, but when the day had been long and the world seemed cold, home was a place to rest and regain my strength for the battle ahead.

It was a place where the oddities of living with a fatty acid oxidation disorder, such as drinking massive amounts of Gatorade and eating multiple doses of oil-infused yogurt wasn’t a spectacle. It was the one place in the world where those practices were considered normal with no additional explanation needed. Having a place where the ins and outs of my disorder were known by everyone was a relief. Outside my home, daily interactions about my disorder involved questions followed up by even more questions.

Everyone and anyone had a standing invitation to our yearly Christmas Eve party, which is one of my favorite holiday traditions. As my parents often said, “It is a place for the people who do not have anywhere else to go because no one should have to be alone.” Our home was always filled with people — old and new friends and people with nothing and everything — who needed a place to laugh, smile, joke, eat and be surrounded by others who just “get it” and accept you, regardless of their circumstances. It is there that I learned one of the most important lessons of all: A home is meant to be shared.

For this reason, especially since as I’ve gotten older, home has become increasingly more important to me. I’ve always found myself searching for a piece of it in almost every aspect of my life: my family, my friendships and relationships, my career, my hobbies and even down to the non-obvious things such as the clothes I wear and the words I speak.

Eventually, I had to leave that original home to go to college and then for my first apartment of my own. But that feeling and yearning for home never left me. A home as warm and comforting as the one originally created for me was hard to come, but I wouldn’t settle for anything less.

This led to me being heartbroken more often, and possibly more easily, because I seek out that deep part of “home” in everyone I meet and everywhere I go. Sometimes, it’s just not meant to be, which I tend to take way too personally. Not all people share my comfort level with complete, and sometimes overwhelming, transparency. It took me a long time to get this way myself, as I am sure anyone with a chronic illness can relate to. I can be self-conscious about it, but eventually I realized it’s a “human thing” to be messy, scary and complicated, not a “chronic illness thing.” There is no point in hiding that part of me from the world because it’s a part of me that will never go away, just like my illness is never going to go away.

I often ask myself, “If someone doesn’t know about my illness, do they really know me?” The answer is always no. I agree that it can be hard to let people in, especially when you don’t know how theyll react, but it is better to have them know and walk away then have to hide a crucial part of yourself — at least you know the truth.

At the end of the day, though, others have experienced different lives that have shifted their inclinations elsewhere. I accept that, but in first attempt, I always try to gain their trust, so they know it’s OK to share those messier parts with me. I don’t see these parts as flaws, but rather as triumphs — proof that a person has survived hard times. But in the end, there will always some who don’t want it to be found. I have learned, somewhat reluctantly, that I must accept that, too.

Home isn’t always easy to find, and it is certainly not always easy to keep. How do you define home, never mind find it and make it last? To me, home isn’t necessarily so much about comfort, especially for those of us living with a chronic disorder, since the concepts of comfort or even stability may never be completely possible. However, I’ve realized that in no way means home is lost for us.

I also discovered that home can never really be “found.” It must be built, rebuilt and patched up often — from within. Home is a real part of everyone and everything we come across, but it takes strength and dedication to seek it out because it isn’t easy work. And a lot of the time, it can be messy, scary and complicated due to the fact that it’s the one place you are vulnerable with your defenses down.

For me, seeking home requires finding love from myself and others, even in the most bitter and angry parts of the soul. It’s accepting that my home may not be, now or ever, be picture perfect like something you would see in Traditional Home magazine, but that doesn’t mean it’s any less meaningful or beautiful.

When the lights are dimmed, the gaze of the camera is turned and the expectations and commitments fade, the piece of home built within ourselves and how we share it with others is what’s left. Even though that part of me is flawed, unpolished and unpredictable and maybe even some days seemingly unpreventable, it’s the truest part of who I am. That is where I want people see me and love me because that is where, no matter what happens in life, I will always need to see and love myself.    

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