If you have been living under the despotic rule of the autoimmune system disorder Rheumatoid Arthritis, you know what I am claiming here: This disease is not for anyone who is struggling financially and is also not equipped with chronic optimism. A comprehensive health insurance helps, of course: Minus the minimal deductible, it covers the very expensive monthly medication some of us rely on to complete basic functions (mine is a weekly self-injectable protein shot – no other treatment helped me). There is, however, something we seek to attain just like non-sufferers: “Quality of life”. Our goal is to enable ourselves with that very slippery gift beyond the mere act of medically suppressing what accompanies us every day for twenty-four hours.
Getting up to greet the new morning is, to many, a cause for happiness. For the realization alone that there are a multitude of problems of fatal impact in the world. We, after all – among numerous other gains, have our health, right? Not so for someone with R.A. We appear healthy on the outside – if we have not yet been hit with external deformations, that is.
Allow me to lend us a scenario around someone like me: Healthy in the exterior.
It is the onset of a new day. Time to get up and head to work. A full-time teaching job that recognizes no evenings or weekends as your own. Using up all your energy supplies – in other words, not being able to “budget your energy”, as is required from R.A. patients, the workday somehow is a success of some degree. At the time of arrival at home, however, you are drained yet must generate energy from somewhere in order to meet the demands of those hidden work hours that just go on and on. Taking over your weekends, one week at a time. Lest a flare-up occurs, then you walk through your work responsibility like one of the creatures some of your students seem to prefer to know better than the actual course material: A Zombie. When back at home, you dismiss everything that awaits your attention in order to get back to life. Postponing every deadline in sight. Thus, leaving control to those unrelenting piles of more and more accumulating responsibilities.
Unless you own a self-cleaning home or live in an assisted community environment, you must – at least on occasion – clean your residential place. Unless you belong to the “financially well-to-do” class, you yourself must attend to that process on your own. Just like the persistent hills of work-related duties during a flare-up, your cleanliness-needy living quarters fall only short of shouting at you in despair to gather the cleaning supplies.
When relying on paid services is out of the question, laundry chores with R.A. don’t come with an easier-to follow-manual. Dishwashing, though, has a gentler call.
What I list here include only the basic necessities to run a household, and only touch on their raw surface. Furthermore, completing any or all of these processes despite R.A. merely constitutes quality of a living space. How about attaining “quality of life” to which we, R.A. sufferers and non-sufferers alike, are all entitled?
A critical self-help, better yet, self-improvement action is maintaining a healthy weight and keeping physically active. Simple enough in theory, isn’t it? Let us quickly scan through what I have summed up before: Preparing well-balanced meals and committing to a regular exercise routine await time and energy. What, though, is left for someone with this disorder outside a constant work schedule and the desperate need to rest to make that labor possible? A cruel lose-lose situation arises: The more inactive you are, the worse your body’s condition gets. The more your physical shape deteriorates, the more sedentary you become.
“Quality of life” also entails experiencing the world around us as well as socializing, doesn’t it? We want to mark our lives with at least some meaningful moments, either by traveling or being out there in our surroundings. To feel, to hear, to see life. As a crucial part of this living process, we also want to interact with people we like, care about or love. To meet with our family and friends as often as they want to be around us. Instead of dreading their invitations for a social gathering or outing. For, we have to decline yet once again a joyous opportunity on account of the incessant feelings of fatigue under which we are weakened. Our family members and friends – meaning very well – don’t (and can’t possibly) realize what living with this disorder means. What daily activities they are capable of doing without even thinking, involve for us.
Whether our steady companion – bouts of depression – remains so very loyal to us because of our physical limitations or the lack of intellectual and emotional fulfillments due to those restrictions, remains an unknown. Then again, why look forward to an answer? One would, after all, force us to attempt something anew, for which we won’t have the time or energy in the first place.
While I end on a negative note, I must add how a sense of humor helps me most of the time to get through what it is that is with me all the time. When an infecton seems to be in attack while I am being treated for another, it then gets to be quite difficult to laugh off that condition. Those difficult instances are what I intended to get the word out for on a personal level today. From our health care professionals, we hear either good or bad news as far as our R.A. Based on a pain-assessment survey with your doctor’s office, for instance, you are managed well – if your response to painful happenings on your body surpasses some majority of patients, that is. But don’t we know the best regardless, how this issue reaches far beyond a mere pain detection or its so-called “management”?
I know, as you do: We are not alone. Still, R.A. is a disease that has the capacity of leading one to live a lonely life. Whether or not you, too, are living with this condition, seems not to matter; for, any chronic disease must surely have an impact on one’s psyche. Please comment, if you can and do relate. Your sense of optimism but also pessimism may yield to an exchange of ideas or insights into lifestyles where details don’t appear as gloomy as they do on my blog site today.
You have my thanks for listening.
2 responses to “R.A.: A Disease for the Well-to-do and the Unremitting Optimist”
Thank you for sharing your story Hulya. I can’t imagine how difficult some days must be! I appreciate the fact that you are able to use your sense of humor at times. Laughter is often the best medicine!
Dear Kathy, my thanks to you for listening. As for laughter, I agree with you: It is “often the best medicine!”