Personal reflections on the social impact of chronic disease
I told myself I wasn’t depressed. Just dispirited, discouraged, despondent, dejected.
Told myself to get over it. But what I felt most keenly was a sense of loss; losing myself, losing my emotional resilience, grief at the loss of my past healthy self. The positive outlook that I had nurtured in the early years after my Rheumatoid Arthritis (RA) diagnosis was fast fading. In place of it was an insidious understanding of my compromised state of my health and the progressive nature of my disease. Attempting to look down on the circumstances from 10000 ft, it struck me that we don’t realize how much good health contributes to our mental outlooks, till we don’t have it anymore.
A diagnosis of RA can be a profound, life-changing event. An incurable, autoimmune disease, it causes widespread inflammation throughout the body, with chronic pain, overwhelming fatigue and potential disfigurement of the joints. And that’s not the only bad news. Like other rheumatic diseases such as spondyloarthritis (SpA), and systemic lupus erythematosus (SLE), it has systemic effects so RA patients also have a 50 percent higher risk of heart attack and twice the danger of heart failure.
Functional capacity and repercussions on employment
Before RA consumed my life, I was an educator. As my disease progressed, about six to seven years after my diagnosis, I became keenly aware of my limitations. I was sensitive to the fact that it was difficult to be what my students deserved. I couldn’t sit for long periods for fear of the painful stiffness setting in, I couldn’t stand for long periods without stressing my joints, and the unpredictable nature of the joint flares as well as the disabling fatigue, made it hard to show up everyday.
Given all of this, it was not surprising that I felt as emotionally bruised as I did. But a sense of guilt and and unhealthy stiff necked pride had me plowing on through flares in my hands, wrists and neck, which are my worst joints. So hanging a laptop bag on my shoulder stressed my cervical vertebrae but carrying it in my hand was a recipe for electrical shocks of pain in my wrists. Typing with swollen hands was increasingly hard and rising from a chair after working with a student for an hour meant the humiliation of not being able to straighten up.
Ultimately, about 13 years after my diagnosis, I gave up working with students. Soon after that, searching for answers about how others had managed their working lives, I found an eye opening meta analysis by BMC Rheumatology from 2023.
Their findings corroborated earlier research that indicated a substantial decline in employment rates over time, among patients with RA. The study “identified a decline in the employment rate among patients with RA, with a notable decrease from disease onset, at study entry and at follow-up, where only half of the patients were employed. Employment rates were nearly 80% at disease onset; 47.0% at study entry, and 40.0% at follow-up. Notably, previous studies have reported that approximately one third of patients with RA stopped working within 2 to 3 years after disease onset, and more than half were unable to work after 10 to 15 years.” The analysis included a total of 101,831 participants; the mean age of participants was 51 years and 75.9% were women; disease duration varied between less than one year to more than 18 years on average.
Basically, the loss of productivity due to RA is significant as the disease reduces functionality, with an increase in sick leave, unemployment, and early retirement.
Social isolation and loss of recreational activities
Not only do RA patients find it challenging to be as productive as before in their employment settings, they find sports, hiking, running, knitting, crafts, birding, traveling, etc. also demanding. They struggle to even maintain social interactions and relationships in the same ways as before. And since symptoms vary significantly on a daily basis, it is difficult to plan ahead since you don’t know how you will feel the next day, leading to a feeling of having lost control of your life.
Just last month, the National Institutes of Health noted that “depression is a common condition with RA, with a prevalence rate of approximately 16.8 percent. This is significantly higher than the prevalence rate of approximately 6 percent found in the general population.”
RA depression probably begins with sadness and frustration due to many factors. Your relationships with friends and family are affected, your ability to work is impacted, your social life may be damaged and you could be robbed of some independence. You are coping with fluctuating daily symptoms, dealing with the emotions of living with a long-term condition that needs life long treatment with complex medication regimens that have serious side effects. In addition, not everyone responds well to treatment, and disease flares are common, even when RA is well-controlled.
The stress of living with RA pain and fatigue is a constant battle. Experiencing it day in and day out, it is hard not to slide into depression. Luckily, I have been able to continue my exercise of choice — a few miles of trail walking in the woods with my dog everyday. In fact, the naturally mulched trails make it a perfect low impact exercise and the forest-bathing is a balm for my spirit.
However, there have been setbacks in my social interactions. I used to love inviting a bunch of people to a home cooked meal — it made me happy. But shopping, cooking, prepping, hosting, and clearing up had me paying the cost in painful flares for the next few days. And then of course, listening to my normally supportive spouse say, “I told you — you shouldn’t have.” Reluctantly, I gave up inviting groups of guests for dinner, unless it was just one or two people and it was very casual.
Meeting outside for meals is one way I try to catch up with friends, but even then, it all depends on the ‘flare of the day.’ It does mean that a number of friendships and acquaintanceships have fallen by the wayside — you know how it is…when a certain amount of time passes between catch-ups, it feels awkward and neither makes the attempt to reschedule. With the preternatural exhaustion, I was rescheduling appointments, lunch dates, fun activities (some to never be taken up again), and I simply found it easier to not even make plans. Essentially, I wouldn’t be annoying or disappointing others with a last minute cancellation. It was only me who was always disappointed, frustrated and seriously blah with no enthusiasm for anything.
What works for me
Despite the unpredictable nature of the beast, I do have some good days. I seize those days. A particularly long walk with my golden retriever, a shopping expedition (and sometimes, it is to the grocery store just to prove I can still carry the loaded bags), an impromptu lunch or coffee with a friend, some yard work, some writing, some art, an intensive cooking spree. Because being cautious on the good days won’t prevent flares the day after. But being productive on a good day will help you get through the bad days. Health is more than physiology — people want to lead fulfilled, meaningful lives.
I think it behooves us as RA warriors to speak up for ourselves with our doctors and our caregivers when we struggle with mental health. Ask for what you need, whether it is a mental health assessment, medication, therapy, some slack; do what calms your soul and body, whether it is a walk in the woods or a day of rest; and above all, give yourself a break. It’s a lot that we are going through.
