I Am Not a Burden Because of My Chronic Illness
But sometimes I feel like oneby Lene Andersen, MSW Patient Advocate
“I am a burden because I am sick.”
It’s an unwelcome and deeply sad moment when this thought sneaks into your head, often in a moment of pain or sickness. It tiptoes in late at night while you’re staring into the darkness, unable to sleep for worry. It pops into being when you have to ask for help from your spouse, family members, friends.
Burden. Such a heavy word. Such a heavy weight to carry.
We live in a culture that values independence, to the point that all of us — sick or healthy — have an aversion to asking for help, even when the task legitimately takes a team. Relying on others is anathema to our being, but then chronic illness appears and suddenly you have no choice but to ask.
My life with rheumatoid arthritis (RA) often has my mind firmly rooted in a particular category of worry: What do you do when you feel you cannot ask for help again and again, but very much need that help? What do you do when you can feel an exasperated sigh vibrating off of the person upon whom you are dependent, even if they don’t actually audibly sigh?
There is a story that the Inuit — indigenous people of northern Canada, Alaska, and Greenland — would put the elderly out to sea on an ice floe when they ceased being productive (in reality only very rarely practiced during periods of extreme hardship). But living with chronic illness can make us wonder: Do others view us as unproductive and a burden? Will our spouse leave us? Will friends stop calling? Will we wake up some day in the dark, on a metaphorical ice floe with no one left to bridge the gap?
Here’s the thing: We all need help at some point and usually more frequently than we realize. Whether it’s help moving, the name of a good hairdresser, or an explanation of that joke we don’t get, help is an integral part of the human community. We create connections through helping each other — many people even include it as an important and formalized part of their lives. Volunteering, that beautiful North American desire to give back, is all about helping. Without volunteering — without helping each other — many would be lost and stuck in misery.
On an individual level, asking for help allows others to show their love. When you get sick with a chronic illness, it affects not just you, but also your family and friends. It’s normal to feel helpless when receiving a diagnosis, we talk about how to adjust when getting diagnosed, but very few of those who love us get any advice on what to do. They may feel as helpless as you, with a desperate wish to make things better for you. Asking for help allows them to do something.
But what about that sigh? The question to ask yourself is whether it is actually there, or something you fear might happen. And after that, a conversation — open, raw, and fearless — between you and the people from whom you need help, is absolutely necessary. Talk about how they can help you, especially during periods of stress or fatigue. And then talk about how you can help them in return.
Because this you may not have realized: Though you need help, you are not helpless. You may not be the person who hefts the furniture during a move. But you could be the one who books the movers, negotiates a stellar rate, orders the pizza.
Help is not only about physicality, it is also emotional, mental, organizational, conversational. The important part, especially for the person receiving the help, is reciprocity. That give-and-take allows for dignity and equality in the relationship. And in that space, burdens do not exist.