In an email that I received the other day, a reader asked me if I ever feel like a burden to those people who are around me. When I stopped to ask myself this question, my answer was an immediate “no”. It’s sort of funny in a way, though, because the last few times that I asked myself this question, my answer was the complete opposite.
After all, there is so much that we require when we live with chronic illness. One of the heaviest tolls this takes in on the checkbook; I barely need describe all of the money that is constantly being spent on medicines, treatment, physical therapy, labs, and so on. Combine this with this fact that I myself am able to work just a fraction of what I used to, and the financial equation is being squeezed on both ends: income and expenses.
Next comes the fact that there are times when I can do almost nothing except lie awake in bed. I can’t contribute an equal share to the household chores, to running errands, to cooking meals, etc. As my dedicated partner picks up the slack yet once again, even if it is a Saturday (the one day of the week when I try to exert my strongest force possible in order to give him a break), I think it’s easy for feelings of unfairness and resentment to start to grow.
And I could go on and on about how much attention is dedicated to my health and well-being, but suffice it to say that almost all aspects of daily life are in one way or another affected by the presence of chronic illness, especially such a debilitating disease as rheumatoid arthritis. This disorder takes a toll on me each and every day, and I know it does quite a number on those who are close to me. And speaking just for myself, I know how angry, how sad, how hopeless, and how depressed this illness can make me feel at times.
So yes, I used to think of myself and my illness as a burden–not just on myself, but on others as well. But I don’t think so anymore…and it made me think, what sparked this recent change in my thoughts?
Doing What I Can
Yes, I know that I may not always be able to do my 50% of what needs to be done, but I think that I continually show that I’m able to do as much as I can. (And no, I’m not suggesting that one work against those limits, even on days when you’re doing better than usual.) Chores, as annoying and painful as they can much of the time, have become occasions to show myself what I can do. On most evening, I take pleasure going around the house to draw the curtains (which always remind me of one of my favorite childhood books, Amelia Bedelia). I may not be able to scrub the pots, but I can wash the plates and glasses. There are other items, such as planning and organizing, that I am particularly good at, and that can be done while sitting. So I may not be able to do half of the household work, but I able to still do a lot…just in a different way.
Staying in a Good Mood
Okay, I know, there are days when we feel like walking death, and when the flames coming out from our noses are sometimes not even signal enough to give sufficient warning to those around us that we’re in a bad mood. But I’ve learned (and haven’t yet reached complete success, but I think I’m much closer than I used to be) to not take out my pain on other people. Don’t snap, don’t yell. Once again, I’m not advocating that one should hide certain emotions and feelings that do need to come out and be worked through…but we’ve got to make sure to do so in a way that does not harm those around us. They may not feel our pain directly, but they do feel their own certain pain…and I for one need to do whatever is in my ability to not make it any worse for them.
Maintaining Open Communication
Sure, rheumatoid arthritis brings a lot of issues into my personal relationships…but then again, so does everything else in life. Jobs. Relationships. Family. Friends. Politics. I’m going to make an all too obvious point, but one which I don’t think can be stressed enough, which is the importance of talking, and of sharing feeling, with those around me. Sometimes I wake up and just assume that everyone knows I’m in a lot of pain and in a bad mood…but if I stop to think about it, that’s not always the case. Talking helps. And it helps even more when it’s not always done during moments of crisis. During those down times, when the pain is less and I’m able to do more, it’s nice to talk–and plan–about what works best for me and those around me, next time I’m back in a flare.
Not Just Receiving, But Giving Attention
And when it comes to personal relationship, such as the great one that I’ve been in for the past eleven years, I think it’s particularly important to remember that our partners/spouses need their own fair share of attention, for their aches and pain and feelings and moments of joy and periods of sadness. I know firsthand how easy it is to get consumed by the constant needs and demands of my disease…but it’s great to remember to give both myself, and especially those around me, the moments of attention that we all need.
Chronic illness does place a huge burden on the person living directly with the disease, as well as their friends and family…but with the proper attention, and effort, these imbalances can be corrected. The solution may not always match what we’re used to, but there are ways to work things out.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!