This was the first time my husband and I took our three sons on a plane. Everything went smoothly, and I was filled with anticipation for what to expect after landing. However, when I entered the aisle to get off, I realized that I could not walk.
In fact, I never know when my body will decide not to cooperate. Sometimes I can walk fine or with a slight stiffness. My brain yells at me to move, but my body can’t keep up.
I am one of millions of people living with a chronic illness. For me it’s rheumatoid arthritis. Rheumatoid arthritis is an autoimmune and inflammatory disease that affects the joints of the body, causing pain, stiffness, swelling and deformity. It can also affect the eyes, heart, and/or lungs. The drugs used to treat RA are immunosuppressants and come with a long and daunting list of warnings and possible side effects.
Those of us with invisible illnesses and disabilities often deal with being misunderstood and judged. Most people assume I have osteoarthritis, but this is much more common and is caused by the cartilage that cushions the ends of bones wearing away over time. It doesn’t help that the disability caused by RA is not always outwardly visible to others. In support groups I work with, we often hear stories of RA patients being questioned when parking in handicapped parking lots or using motorized shopping carts.
Hiking was one of my favorite hobbies before my diagnosis. You can even take a cane and go hiking as long as it’s not too strenuous. Some days I can’t go hiking. We usually don’t know what the day will be until the day comes.
On the last hike I took with my family, I became emotional as I realized that a hike that was not so difficult before was now beyond my ability level. It can be difficult to reconcile that my mind and soul still want experiences that my body cannot perform.
People with chronic illnesses may cancel plans or ask to participate at the last minute. This can make us look unreliable or insecure. There is a famous saying among the chronic disease community that perfectly describes this point. But just because you can’t do it today doesn’t mean you can’t do it tomorrow. ”
Living with this uncertainty can lead people with chronic illnesses to anxiety and depression.In fact, its prevalence is Depression in a living person Patients with RA are 2-3 times more likely than the general populationThe numbers are similar for other chronic diseases. According to the Cleveland Clinic“An estimated one-third of people diagnosed with a serious, life-altering chronic illness or illness experience symptoms of depression.”
When you are diagnosed with a chronic disease, you have to mourn the body you once had. You may experience stages of grief such as denial, anger, bargaining, depression, and finally acceptance. I have lamented my dependable body. body with energy. A body that you can expect to feel better rather than feel worse.
When I was diagnosed, I knew I would face chronic joint pain, but RA is a systemic disease that has caused more problems than I could have imagined. I have had shingles, hair loss, costochondritis (inflammation of the cartilage that connects the ribs to the sternum) several times, neck headaches due to inflammation of the base of the skull, chronic infections, and most recently an asthma attack. These problems are mild compared to the complications experienced in some RAs. Most patients with RA Twice as likely to develop heart disease, and the risk of developing lung disease 8 times higher in people with RA than the general population.
Living in this era of “health” can be difficult even for those of us with chronic illnesses. It can be toxic when used to How good do you want to be? is a message commonly used to sell diets, supplements, coaching, etc… Grief. When you accept that you are living with a chronic illness and try to make the most of the situation, instead of looking for ways to “cure” or “cure” an incurable disease.
A common form of psychotherapy called dialectical behavioral therapy has a pain tolerance skill called radical acceptance. It is the act of accepting information mentally and emotionally without judgment. Designed to prevent pain from suffering. This skill can be very difficult to practice when I am going through intense physical pain. I’m just trying to live each moment.
But I am fundamentally learning to accept that I don’t know how or when my body will feel. It also means to live A bad mood often makes us more directly aware of the fragility of life. It also makes you appreciate those good days in ways others might take for granted.
Nothing in life is guaranteed. What really matters is how we treat each other. On the plane that day, after I was finally able to stumble down the aisle, I got to the tarmac and moved to the side so people could get through. Then I felt a hand on my shoulder and heard a gentle voice asking if the woman was okay. She showed concern rather than impatience.
This simple daily exchange reminded me that sometimes I can rely on someone who understands, even a stranger, for my “invisible” disability.
All humans face trials, pain and struggles, not just those of us with chronic illnesses.we can never You can tell what they are dealing with just by looking at someone. T.The uncertainty that comes with living with a chronic illness was very unacceptable to me.
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