If you’ve been tasked with walking someone through an intense autoimmune journey, it can be a delicate matter. There are a lot of varied emotions that fluctuate based on how that someone is feeling on a given day. Pain is a tough taskmaster, and to imagine the pain and crushing fatigue that your loved one is experiencing is limited. As I perused my husband’s planner for the month preceding one of his major back surgeries, I know that he was trying to document in more detail the sensations and the impact. We were in the throes of the Social Security system, having been twice denied. My husband kept his symptoms logged for about a month, then stated that he could not bear to do so any longer because of the negative focus it created. It was tough enough to have so much pain and fatigue, but to reflect on it in order to create a record was just too much. Reading over his entries, I understood why. Worse, this was a time during which he seemed to be tolerating as much as possible. A year later, it was evident that his pain levels were becoming increasingly worse.

In the midst of this time, there were a lot of transitions for our family, including my return to the workforce outside of the home. Others would also refer to me as a caregiver, but on the one occasion that I used this descriptor of myself in my husband’s presence, I discovered that it was an objectionable term. Although I was his helper and caregiver in many respects, the term symbolized his loss of independence, something he was already grappling with and fearful of. I glean more of the reasoning as I study special education at the graduate level. People-first terminology is important to ensure that we are not defining individuals by their disabilities – disabilities are issues that are dealt with, not who people are. My husband clearly did not view himself as disabled, and he strived to the end to be as independent as possible. While he needed my help or someone else’s nearly daily to accomplish some of the most basic tasks, he pushed himself to the maximum possible to get up and move, to do things, and to spend time with his family.

Caregiving is a delicate task, an important task, but one that demands understanding. Those who provide care in medical settings range in their handling of this task, some maintaining the dignity of their patients and the loved ones who keep them company, others being quite abrupt and inconsiderate. We were blessed to have mostly compassionate individuals grace us with their service in the ICU during my husband’s final days. The more brash individuals were miraculously swept away or not noticed greatly. I have no great words of advice because everyone’s journey is different. However, I can say that it is important to take cues from the person in need of care – if that individual is striving for independence, consider labels carefully!