Feeling Like a Burden: My Complicated History
If you were to talk to anyone with a chronic illness and ask them about their fears, I think there are a great many that would share their concerns about becoming a burden to those around them. An incurable disease like multiple sclerosis (MS) can really upend our lives, and I’d say the only thing worse for most of us is, it upending the lives of our friends and family. Becoming a burden on others is a common fear, however, in my own case, it runs extremely deep.
Not my first rodeo with MS
As of this writing, I was diagnosed with MS over 23 years ago (now having had it longer than I didn’t have it). My diagnosis was not the beginning of my MS experience though, that came considerably earlier. You see, from my time as a small child through my own diagnosis, my grandfather suffered from MS. At one point, early in my childhood, he moved in with my family and we helped to care for him. This was a time when there were few effective treatments for MS and his illness (what would later be my illness) really did damage.
His level of disability increased greatly over the years. He was completely bedridden before I was even in high school. By the time I was diagnosed, he was completely immobile, and could not speak, eat, or talk. He required a catheter and any bowel movement required my family or a visiting nurse (when we could afford one) to change and clean him. I assisted when I could, but not nearly as much as I now wish I had. He required someone at our home 24/7 for his care.
The impact on my family
The care of my grandfather had a major impact on my family. In later years, we rarely went on vacations together. To simply go out to eat together, we’d have to hire a nurse or have someone we knew (who was properly trained) come and be at the house. My dad would often have to get up in the middle of the night for various reasons. Aside from the logistical and financial issues associated with caring for my grandfather, it took its toll in other ways. It brought a tremendous amount of stress to my family, my parents in particular, as well as to my entire household. I do not once regret our family caring for him, it was the right thing to do, but it certainly made life difficult at times.
The impact on me
I probably don’t even have to say much here, I mean, imagine growing up in that situation and then being diagnosed with the same disease. As you might expect, it had an impact on me. I was diagnosed early in college and having to tell my family of my diagnosis is still the most difficult thing I have ever had to do. For a family with that history with the disease, I wouldn’t wish that moment on my worst enemy. I’m sure you can imagine how difficult it was for me to tell my grandfather as well. Despite all that I’d seen, I wasn’t afraid of the disease (I was young, arrogant, and assumed I’d beat it, somehow), but I was afraid of being a burden. I was, no, I am, afraid of being a burden to others.
Lingering concerns about becoming a burden
It’s hard for me to forget the stress my family experienced or the arguments that were had because of caring for my grandfather. Those were understandable, but still difficult for me to process. The level of care my grandfather required and the inconveniences it caused others, have left me extra sensitive to being a burden and putting people out.
Along with that, my family took care of my grandfather because my grandmother left him. While there may have been non-MS aspects involved with that, I can’t tell you how big of an effect that had on me in later years, particularly in regard to relationships. It’s difficult for me to accept help and even simple niceties and gestures will at times make me worry that I am burdening someone, and that I will end up like my grandfather. Even though I know better and am in a much better situation with the disease than he was, I am still impacted by these concerns of being a burden.
I don’t have some magical advice to help you (or me) feel less like a burden, but I can tell you that I understand your concerns on a very deep level. I appreciate your reading, this was a special one for me and a very difficult one to write.
Devin
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