Not a Patient
I’m not the most patient person. I’m also not great at being a patient. For many years I was called or even thought of myself as an RA patient, but recently I realized that I just don’t fall under this label. I am not a patient. I’m a person.
What is the distinction? A patient is nameless, lacking identity. They don’t have a full life, surrounded by people who care. Procedures and treatments are prescribed and done to a patient. A patient is an object, not treated as a unique person, but rather as a problem to be fixed. Or an illness to be conquered.
When you are a patient, you have to endure endlessly. You have to be ceaselessly patient because people are doing things to you without asking. You have to be still and quiet.
These are not things that I can do. My ever-patient husband will attest to my lack of patience and willingness to sit quietly when someone wants to inject me or test me or jab at me in a hospital or doctor’s office. I have the pesky habit of asking: Who are you? What are you doing? Why? What is the purpose? How is this supposed to help me? What are the potential side effects?
While I do use the term patient, I do it because it is a word people understand. I much prefer: people living with rheumatoid arthritis. I like people-first language, because first of all we are people! While a condition may affect our lives and become something integral to our identity, it is not the entirety of our lives.
While I like and appreciate my doctors, I find it important to remind them that I am a person. My husband comes to most of my appointments and we talk about my health in context of my life. For example, when I have a flare up it is not only painful, but also affects my ability to go to work and go about my day.
My goal in not being a patient is to live a full, well-rounded life. I may have RA and live with serious pain and limitations, but my health care should be about supporting my quality of life as much as possible. My treatment is not only about slowing the disease, but allowing me to live a life that I enjoy.
RA falls into the category of illness that is ongoing and cannot be cured. Throughout my life I have understood that the medical community prefers diseases that can be cured, bugs that can be killed, illnesses that can be knocked out with a drug or treatment. But as technology and health science has evolved, we now have more people living with chronic illnesses like RA. We will not likely be cured and so we cannot live as patients. We have to be people.
I appreciate that the distinction may be difficult to understand, that it may seem like I am being picky about words. But I think it’s important that our doctors and others understand the humanity of their patients. We are people with lives and loved ones and responsibilities. Before we ever had RA and struggled with swollen joints and pain, we were people living and working.
So don’t be afraid to remind others that you are not a patient. You are a person. You are a person living with rheumatoid arthritis. You are a person with friends and family and activities and pets and jobs and homes and so much more. You are not an illness to be cured or a problem to be solved. You are a person first and foremost.
Does your RA impact you financially?