Rheumatoid arthritis (RA) is an autoimmune disease that affects the small joints of the body, such as the hands, feet, wrists, and ankles. It can bring about unwelcome symptoms like brain fog and debilitating fatigue, and even impact other organs like the lungs, heart, and eyes.
Despite the significant impact RA has on people’s lives, it is often considered an invisible illness. According to invisibledisabilities.org, an invisible illness refers to a physical, mental, or neurological condition that is not readily apparent from the outside. This means that the physical limitations imposed by RA may not always be observable to others. Individuals with RA face a wide range of limitations, from mild wrist pain to complete physical disability.
As a medical provider living with RA and a public advocate within the RA community, my experience has been quite the opposite of invisible. I have received a formal diagnosis of RA around nine years ago, and there are many aspects of me that I wish people would notice before my RA.
Invisible Illness, Not an Invisible Person
Despite RA being an invisible illness, friends, family, and professional peers often tend to recognize my limitations, attributing anything amiss with me to my condition. While their concern is appreciated, I wish they would sometimes overlook these limitations and recognize that not everything is a direct result of RA.
Whether it’s perceiving my perpetually cold hands, assuming intimacy is affected, scrutinizing my food choices, or ascribing any challenges to RA, there is a tendency to attribute everything to the condition. However, it is important to see beyond the limitations imposed by RA and understand that I am more than just my condition.
Cold Hands
I am almost always cold, despite residing in a hot desert climate. During the colder months, the cold feels paralyzing, hindering my mobility. More often than not, my hands are icy to the touch as well. As I age, my tolerance to the cold seems to diminish further.
Personally, I don’t believe this is directly related to my RA, but it is a perception held by others. Perhaps there’s an element of Reynaud’s phenomenon, but regardless, it doesn’t change the fact that I require measures to keep warm. Many people, especially my athletic and outdoorsy friends, jokingly tease me about my intolerance to the cold.
Even when working, my icy fingertips startle patients when I need to examine them. I want people to understand that although my hands are cold, I have a warm heart.
Assistive Devices
I rely on assistive devices for tasks like opening jars, cans, using keys, and office work due to the chronic joint pain caused by RA. While I need these assistive devices for various daily activities, I genuinely appreciate their usefulness. Not to mention, the ergonomic benefits they provide are significant.
Throughout my health care career, I have witnessed the advancement of electronic and mechanical lifting devices, machinery designed to aid with bending, twisting, and gripping, and other incredible technologies that prevent overuse injuries in health care workers. I don’t love these assistive devices solely because of my RA; I love them because they are truly amazing.
Life Skills
Just because I’m not skilled at a certain aspect of life doesn’t mean it’s due to my RA. I recall a conversation with my father where I mentioned that I’m not as strong of a swimmer as I used to be. What I meant was that I’m no longer a teenager with boundless energy and the ability to swim out into the open ocean and back without a care. My father’s response was, “Well, you have RA, so that’s why.”
The truth is, my reduced swimming ability is simply a result of aging and not being in the same shape as before. Similarly, my lack of cooking skills has nothing to do with my RA symptoms, but rather it’s a personal choice. Furthermore, I genuinely don’t enjoy cooking or cleaning up the kitchen, and I have a distaste for paying bills, but these preferences have no relation to having RA.
Sex & Intimacy
Intimacy and pleasure are important for all individuals, including myself. Sex is a fundamental aspect that perpetuates the existence of the human race. Unfortunately, our society sometimes assumes that individuals with chronic illnesses, chronic pain, or other health issues don’t derive enjoyment from intimacy and human connection. However, even people with RA can find ways to engage in and enjoy various levels of creativity in their intimate lives. So please don’t assume I’m devoid of sexual desires. Trust me, I feel pretty sexy, and I’m certain my husband would wholeheartedly agree.
Eating Habits
Please refrain from scrutinizing my food choices. Just because I had a Diet Coke and Cheez-its doesn’t mean that’s what I consume every day. (Maybe I do, but that’s none of your business.) My eating habits may or may not directly impact my RA.
There isn’t a one-size-fits-all diet for RA, as each person’s biochemistry is unique. Ultimately, my food preferences are personal and not subject to your judgment. I wish my food intake could be as invisible as my RA.
Health Discussions
If I’m not discussing RA or my health, it’s likely because I don’t want to. Sometimes, even with good intentions, my closest family and friends may bring up topics like, “How’s your arthritis?” or “How are you feeling?” in a pitying tone during casual conversations.
I appreciate your concern and kindness, but if I appear and sound fine, there’s no need to bring it up. Moreover, if you notice a brace, tape, or any other medical device, please refrain from asking about it. I wish my braces and tape could be as inconspicuous as my RA.
Family Life
I’m a pretty awesome wife and mother. I make a conscious effort not to let my RA symptoms interfere with the important aspects of our lives as a family. My RA poses no greater challenge to me than the typical problems faced by any average wife or mother. People often comment, “It must be hard for your husband that you have RA” or “Your poor kids having to deal with your RA.”
My husband and kids are loved and well-cared for. They have no complaints, and they don’t know any different. I am the best wife and mother they could ever have, and they have nothing else to compare me to anyhow.
I am not lazy. I have learned to live my life with efficiency and grace, despite the challenges of RA. I make navigating life with RA look easy because I have spent nearly a decade trying to figure out how to make the most of my life while working around my physical limitations.
Unwelcome Advice
I have a disease that causes a lot of pain and how I manage it works for me. What works for me may not work for you, your family members, or friends, but it’s how I have learned to manage my life and symptoms.
If you’re struggling to manage your pain and facing unwelcome advice from others, know that you’re not alone. Remember that it’s your life, and you must show up as your best, visible self, in whatever way that may be.
Always remember that you are not invisible like your illness.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
