A Fine Balance
How I gave up something I loved to maintain a good quality of life
As a middle aged woman with Rheumatoid Arthritis, the last 15 years have been a crash course in social-emotional learning. About the disease, about myself, about loved ones, about people in general, about the important things in life. It has forced me to confront what is key to my physical and mental wellbeing and what I can live without. But mainly I have learned what I need to do in order to have a good quality of life. And I do.
But it is easy to be sucked into a state of purely ‘living an illness’ especially when the daily mobility challenges, the medication infusions and injections, the emotional rollercoaster and ever-changing symptoms are overwhelming. The goal is to transcend that and find the sweet spot of ‘living a life’ while you are ‘living an illness’.
At some point, with a chronic disease, there comes that sense of clarity.
Clarity comes as people try to integrate their unique experience of the disease into their lives. Integration represents the sense of balance between the demands of a chronic disease and living a quality life. How does one do this, you ask? By developing strategies for self-management, be they physical, emotional, or mental, to support your health and the medication regimen. By making hard choices that will enable you to be overall healthier. And believe me, these conditions that you create for yourself will be as important and sometimes even more valuable than the medications. The goal? To prevent health complications and live a good quality of life..with some adaptations.
Looking for quality in all the right places
So what does a good quality of life really mean when you have a chronic disease? I may only be able to define that with what it is not. Personally, I know that it does not mean I have no symptoms. It is also not a subjective measure of how well I function, despite those symptoms — because that changes on a daily basis. But what it might be — is an assessment of how I am actually doing, as compared to how I think I should be doing.
For example, people with active disease might feel their quality of life is still pretty good if their relationships are healthy — they may define quality of life in terms of relationships, not in terms of the disease. However, someone else who is actually in remission, might find it upsetting to get regular medication infusions, because it reminds them of how sick they were. Those people may define quality of life in terms of reminders of their disease or lack thereof. So it all depends on how you see yourself — glass half full or half empty, I suppose. Mine is perpetually three quarters full, mostly with gratitude that I am not worse, as I expected to be with moderate to severe RA.
In the early years after my diagnosis, I was hopeful, if not unrealistically confident that I could be the same as I always was. Active, enthusiastic, strong, able to walk miles on the woods trails with my dog, and teach for several hours a day. I relied on the knowledge that I was on powerful medications to manage and even possibly retard the disease — so what could go wrong? But the understanding of how the disease affects people differently, how the medications affected me, how often I got sick due to the immunosuppressant drugs, was not something I could have known, without seeing my disease progress.
As the years passed, I began to see the changes in me, mainly the step downs and slow declines, and life became a balancing act of getting as much done as possible while also not losing my mind. The question that I opened my eyes to every morning was — could I really get through the day, and if not, what was going to fall through the cracks? The morning joint stiffness reminded me of my disease as soon as I swung my legs off the bed and the first few steps of pure agony, as I hobbled to the bathroom.
So, as I listened to my body, I realized that a good quality of life is a changing goal post, along my patient journey. It was no longer a case of fixing my symptoms and getting back to how I was before I got Rheumatoid Arthritis, but now it was more about my intention to live a quality life along with the symptoms and deterioration.
There is no one-size-fits-all solution for improving quality of life. But a good path to that goal is to figure out how to be purposeful in your daily life. I try to avoid dwelling on the long term or overarching purpose of my whole life, but instead I focus on the day or the short term. If you can find the purpose of the day, as it were, then the long term purpose doesn’t become a burden to carry. Keep in mind that the purpose will have changed from what you expected it to be and may yet change further.
In my case, the purpose of the day varies — anything from running a bunch of errands or cooking a nice meal or grocery shopping for the week or completing this essay or cleaning my closet or visiting a friend who is much sicker than me. Simple, doable and flexible — but I feel purposeful which, I think, is a prerequisite to a good quality of life. I choose more ambitious purposes on days that I wake up feeling better and keep it real on the more challenging days.
Self-trust
I trust myself to know what will make me feel purposeful and provide meaning to my day. It is counterproductive to follow external yardsticks or let the example of others be a guide. Self-trust is incredibly important for a healthy mind and body but chronic disease can affect self-trust in both positive and negative ways. Healthy people breathe, eat, sleep, and move without much thought — they trust that their bodies will do what they have to do. But that self-trust is broken when a disease changes the physical body and destroys our internal compass. Paradoxically, the integration of my RA into my life strengthened that self-trust.
As I became aware of the ways I was spending my energy and damaging my health, I began to trust myself to change my life in order to meet my needs. And that is what led up to the incredibly difficult decision to stop teaching to preserve my health. It was hard on me to give up an occupation that was intellectually fulfilling and emotionally rewarding, yet was physically punishing.
My immunosuppressant medications which are the standard treatment for rheumatoid arthritis rendered me susceptible to any and all opportunistic infections. While I was religious about handwashing and not touching my face, meeting middle school and high school aged students on a daily basis increased my exposure to pathogens and I was sick with severe upper respiratory, ear and eye infections all too often.
The immunosuppressants made it hard for me to fight off even the simplest of infections which became a weeks-long nightmare with multiple rounds of antibiotics. My rheumatologist had been clear that I was to stop taking my medications when I was sick and not to begin them again, till I was absolutely certain that the infection had passed and I was completely recovered. Pausing the medications did not mean that my dormant immune system sprang back to full strength right away and fought off the bug — in reality, it often took days for my long suppressed immune system to recover and fight the infection. When it came back to life, it would work against the infection but it also attacked my joints, viewing them as a foreign pathogen, as happens in Rheumatoid Arthritis.
So basically, I was falling sick every few weeks with prolonged virulent infections, suspending my meds, and enduring painful flares. I had to measure that against working at a job that contributed to improving the lives of young people in my community. But looking through a health centric lense, the calculus was clear when I weighed the risks against the rewards.
Even when I wasn’t falling sick with exposure to infections, I was expending physical, mental and emotional energy that I did not always have. While I found my teaching fulfilling, it was just not possible for me to carry that kind of energy deficit in my physical body. I needed to conserve my energy to just maintain my life situation — spouse, home, child, dog. So I gave up teaching. And I am healthier for it.
Spoon theory
Though I trusted myself to do what was right for me, how was I to explain my decision and my limited, erratic energy to disbelieving friends and family? I watched women of my age have busy professional lives that brought them satisfaction, accolades and a steady income. Acutely sensitive to the fact that others may see me as wimping out, I often prevaricate when acquaintances ask about my work. There is no small amount of shame and regret on my part, when I stumble through a justification of my decision.
This is where spoon theory makes sense, as a way to quantify and explain the limited energy and constraints of living with a chronic disease. According to spoon theory, healthy people wake with enough spoons or units of energy, to face their day. Different tasks require different numbers of spoons and they can go about their day at home, at work, at schools and colleges, and not worry that they’ll run out of energy.
But a person with a chronic illness wakes with a limited number of spoons. Symptoms like brain fog, confusion, chronic pain and acute flares can use up those spoons as daily tasks can take longer and seem more onerous. If they try to use more spoons than the task requires or more than they have, they may not be able to do anything more that day. Or they may pay a price by having even worse symptoms and fewer spoons the next day.
Psychological flexibility
Not surprisingly, maintaining a good quality of life when you are struggling with a chronic disease requires a certain amount of psychological flexibility. The only thing you can count on is the fact that you never really know what your day is going to look like, and that uncertainty is the name of the game. I embrace the uncertainty. Some mornings, I am calm and capable but other mornings, I am in pain with multiple flares, brain fog, and fatigue that have me cringing at the thought of facing another day. But underneath it all, I trust that I will know what is right for my health and live to fight another day.
You and I may not have a choice about our circumstances but we have a choice about how to live with them. I accept the situation rather than focus on thoughts of how unfair it is — it is not a resigned acceptance but an informed acceptance that opens me to choices that I wouldn’t have otherwise considered. Like the one where I gave up doing what I loved so I could be healthier. I stay present, a cliche — I know, but it means more than we realize — and pay attention to what I am doing rather than do it automatically which lessens the experience. If I have been able to get to an activity or excursion, I am in the moment and enjoy it rather than think about how I may never be able to do it again.
Know what matters; there are few things that will clarify your priorities and values like a chronic disease. Use this clarity to guide your decisions and your behavior.
