When I Feel the Weight of My Illness on My Family

Some days I feel really heavy. Not in the sense of size, but in terms of my weight on the world and also the immensity it inflicts on me. Some days I feel burdened by my body. Some days I feel like a burden.

Disease is so intangible, yet it manifests in ways that can be seen and felt in every aspect of life. I can’t even begin to personify or compartmentalize my illness. There are so many facets, some I wish not to think about regularly. When my disease is at its worst, not a second goes by that I am not thinking about it or dealing with its implications. For the first time in well over a year, I am starting to feel better (knock on wood), and it has made me realize that maybe the good I offer to those around me offsets the baggage that comes with me as part of my chronic illness.

I want to make it known that this disease sucks. Sure, I can maintain a positive attitude and always choose to find the silver lining, but that does not change the fact that I have been through things that have changed me and consequently impacted those around me, whether I am in the midst of a flare or not.

I can handle what my illness throws at me personally, but I will always hate that it throws just as much at my family and loved ones; I can’t undo that damage.

I can handle the loss of control over my body during a flare-up because I am strong enough to take that pain and suffering. I can handle the hours lost napping and the consequential missed experiences. I can handle the loss of friendships because true friends will stick around through good and bad times. But it is extremely difficult for me to accept the concept of being a burden on others, and it used to make me feel like I was losing my mind.

My family has struggled because of my illness, and that is a dense fact that sits on my shoulders. The medical bills, the sleepless nights in the hospital, and the emotional roller coaster I have ridden with my parents are happenings I can never repay. The day I called my youngest sister to come home from school to be with me because I thought I was going to lose consciousness. That time I asked my sister to lie about what was going on out of embarrassment of being known as the “sick girl.” Leaving family vacation early because I couldn’t walk and had a 103.3 degree fever. We have been through difficult things as a family, just as any family experiences, but knowing that these particular endeavors were because of my illness makes me feel helpless.

I am an independent person. If I can take on a task on my own, I absolutely will. I tried for years to fight the battle that is my disease on my own, but that only made its force stronger. Recently, I have let more people in. I am trying to stop pushing people away out of fear of shifting my struggles onto their plates. I finally realized that I need as many people on my team as I can possibly recruit, and that means accepting the feeling of heaviness every now and then.

It is OK to need help. It is OK to feel heavy sometimes. When I recently became more transparent and public about my disease, people asked me why. The answer is because it makes me feel lighter. Knowing that I have people on my side, willing to share in my never-ending fight allows me to understand that maybe I’m not so inconvenient after all. The secrecy I chose to maintain surrounding my illness in the past only made the metaphorical load of bricks on my shoulders weightier. It made me sink. I don’t want to sink; I don’t want others to sink.

I realize that not everyone is afforded such a compassionate and willing support system as I am with my family and loved ones. I realize that not everyone is ready to speak openly about their disease or hardship, whatever it may be. It is so important that we let those around us know that no matter what the battle, we are willing to fight beside them. It is OK to feel a little heavy, just please remember that does not make you a burden.

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

Nonprofit, Room For Joy, Redesigns Bedrooms for Kids With Chronic Illnesses

Growing up, Tory Smock saw her bedroom as a sanctuary, a needed respite from hospital visits to correct her scoliosis. Now an interior designer, Smock spends her time redesigning bedrooms for children with chronic illnesses. To facilitate these makeovers, Smock created Room For Joy, a nonprofit organization in Mesa, Ariz., that puts together creative and medically appropriate bedrooms for [...]
two people talking while drinking coffee.

What Years of Hiding Taught Me About Living With a Chronic Illness

I used to hide. I spent years hiding my illnesses from my family, my friends and sometimes even my husband. People close to me knew I was sick, but I tried really hard not to discuss it. I would say things like, “Oh, we are doing great. I’m fine, don’t you worry about me.” I said [...]
mom with her two daughters

My One Piece of Advice for Parents Fighting for Their Child's Health

For the first time in well over five years we have been away for two days and had a lovely, sunny, worry-free time. Normally we would constantly worry about being out. My daughter Molly can feel quite poorly a lot of the time which makes things really difficult. We try and do our best so [...]
Leaky silver faucet over a sink

The ‘Leaky Faucet’ Metaphor to Consider Before Offering Advice About a Chronic Illness

When you’re sick or have a problem, people have this instinct to try and fix it. We all have this urge and offer unsolicited advice or thoughts in just about everything. It’s one of the ways we relate to each other as a species, irritating though that may be. When you’re having problems with your [...]