This Is What No One Tells You About Having An Invisible Illness

"Those of us with invisible disease and/or disabilities often deal with being misunderstood, and even judged."
The author, who says, "Hiking was one of my favorite hobbies before I was diagnosed."
The author, who says, "Hiking was one of my favorite hobbies before I was diagnosed."
Photo Courtesy Of Katy Anderson

It was the first time my husband and I took our three boys on an airplane. Everything had gone smoothly, and we were filled with anticipation to exit the plane after landing. When I entered the aisle to deboard, however, I realized I could not walk.

The fact is, I never know when my body will decide not to cooperate. Sometimes, I am able to walk just fine, or with only some slight stiffness. Other times, it feels like my entire body has locked up like the tin man. My brain screams “move,” but my body is unable to comply.

I am one of millions of people living with a chronic illness. In my case it’s rheumatoid arthritis. Rheumatoid arthritis is an autoimmune and inflammatory disease that affects the joints in the body, causing pain, stiffness, swelling and deformity. It can also affect the eyes, heart and/or lungs. The medications used to treat RA are immunosuppressants, which come with long and daunting lists of warnings and possible side effects.

Those of us with invisible disease and/or disabilities often deal with being misunderstood, and even judged. I can’t count the number of times people have told me I am “too young” to have arthritis. Most assume that I have osteoarthritis, which is much more common and caused by the wearing down of cartilage that cushions the ends of the bones over time. It doesn’t help that the disabilities caused by RA are not always outwardly visible to others. In the support groups that I have joined, it is very common to hear stories of RA patients being questioned when they park in a handicapped parking spot or use a motorized shopping cart.

Hiking was one of my favorite hobbies before I was diagnosed. There are times when I can still go for a hike, so long as it’s not too intense and I bring my walking stick. There are also days when a hike is impossible for me. I usually don’t know which kind of day it will be until the day arrives.

On the last hike I took with my family, I became emotional because I realized that the hike, which would not have been difficult for me in the past, was now above my ability level. It can be difficult to reconcile that my mind and soul still desire experiences that my body is unable to perform.

People living with chronic disease may cancel plans, or ask to join them, at the last moment. This can make us seem unreliable or flaky. But we never know if it’s going to be a good day, a harder day, or a day when we can barely get out of bed. There is a popular quote among the chronic illness community that illustrates this point perfectly: “Just because I could yesterday, doesn’t mean I can today. But just because I can’t today, doesn’t mean I won’t be able to tomorrow.”

Living with this uncertainty can cause people with chronic illness to become anxious and/or depressed. In fact, the prevalence of depression in those living with RA is two to three times higher than in the general population. Numbers are similar for other chronic diseases. According to the Cleveland Clinic, “An estimated one-third of people diagnosed with a serious, life-changing chronic illness or disease will experience symptoms of depression.”

When you are diagnosed with a chronic illness, you have to mourn the loss of the body you once had. You may experience stages of grief such as denial, anger, bargaining, depression and finally acceptance. I have grieved for a body that was reliable. A body that had energy. A body that I could count on to feel good a lot more often than it felt sick.

When I was diagnosed, I knew I would be facing chronic joint pain, but RA is a systemic disease and has led to more issues than I ever could have imagined. I have had shingles, hair loss, a couple bouts of costochondritis (inflammation of the cartilage that joins your rib cage to your sternum), cervicogenic headaches from inflammation at the base of my skull, chronic infections, and most recently, an asthma attack. These issues are mild compared to the complications some experience with RA. Those living with RA are almost twice as likely to develop heart disease, and the risk of developing lung disease is eight times higher in people with RA than in the general population.

Living in this time of “wellness” can also be challenging for those of us living with a chronic illness. This culture places a heavy focus on personal responsibility that can feel toxic when it is used to shame or blame a person for their chronic illness. How badly do you want to get better? is the message that is commonly used to sell diets, supplements, coaching, etc. I embrace all modalities of treatment for my RA, including holistic treatments, but I have found that I am the most at peace when I am seeking the acceptance stage of grief. When I accept that I am living with a chronic disease and try to make the best of the situation, rather than seeking ways to “heal” or “cure” my incurable disease.

In a popular form of psychotherapy called dialectical behavior therapy, there is a distress tolerance skill called radical acceptance. It is the act of accepting information both mentally and emotionally without judgment. It is designed to help keep pain from becoming suffering. This skill can be very difficult to put into practice when I am experiencing acute physical pain. When I am in a flare and my whole body is in agony, I am far from the realm of radical acceptance. I am just trying to survive moment to moment.

I am learning, however, to radically accept that I will not know how my body is going to feel on any given day. This for me also means not looking too far ahead into the future and living in the present moment as much as I can. Feeling unwell much of the time makes you aware of life’s fragility in a much more immediate way. It also makes you appreciate those good days in a way that others may take for granted.

Nothing in life is guaranteed. What really matters is how we treat each other. That day on the plane, after I was finally able to hobble down the aisle, I reached the tarmac and moved to the side to let people pass. Then I felt a hand on my shoulder and heard a woman with a kind voice asking me if I was OK. She showed concern rather than impatience.

This simple everyday interaction reminded me that sometimes I can rely on people, even strangers, to be understanding about my “invisible” disabilities.

All humans, not just those of us with chronic illnesses, face trials, pain and struggles that are not always visible on the surface. We can never know by just looking at someone what they may be dealing with. The uncertainty that comes with living with a chronic illness has been very difficult for me to accept, but learning to live with it has given me more empathy for others, as well as more patience with myself.

Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch.

Popular in the Community

Close

What's Hot