Do You Ever Feel Like A Burden?

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!

15 Comments
15 comments
  1. Nan Hart says:

    Another great post and so on target! I often think that those of us who are coping “successfully” with RA have really learned the true value of living life from that “glass half full” perspective! Indeed if we are to have satisfying, joyful lives it is the only way to live! Nan

  2. Thrive With RA™ says:

    Hi RA Guy!

    I don’t feel like a burden either, as there are many ways in which we can contribute, despite our RA challenges. Contributions don’t have to be all about one’s physicality (or lack thereof). Like you referenced about organizational strengths, we can come up with so many other ways, such as: What about generating IDEAS? (The visionary Autoimmune Wellness Center is a fine example, I might add). What about initiating a family council discussion? What about talking to someone in-person, on the phone, or online to brighten their day and take our minds off of our own troubles? It’s a short list, but warrants consideration to think outside the proverbial box of perceived “limitations” in our quest to contribute.

    We can contribute; we can serve others. We can do the best we can. I don’t believe we could ever be a burden unless we allow someone mean-spirited to deem it so by BELIEVING it ourselves.

    :)

  3. Jackie says:

    Awesome! My answer is immediately no too. Family and friends are a give and take on my good days I give 110 percent on the bad, sometimes I’ve got to take a little…I’ve said before, I don’t just have RA, my whole family does cause they have had to make adjustments to me living with it. Thanks for being such a positive superhero ;)

  4. Karen says:

    Excellent post RA Guy! I was only diagnosed last year, and am still struggling with finding the right meds as well as learning how to cope on a daily basis with RA. I’ve always been *very* independent, and feeling like a burden is one of the things I struggle with a lot. Your posts quite often help me put things in perspective and not feel so overwhelmed – and I’m sure I don’t have to tell you how incredibly valuable that can be! I appreciate it – thank you. :)

  5. John says:

    Another very thoughtful post. And it’s something I’ve often thought about as well. I’m curious, how many of your friends also have RA? Do you think the question pertains more towards friends/family that don’t have RA as opposed to the ones that do have some type of chronic pain? A lot of what you said came to mind for me – i.e., find other ways to contribute and change your mindset, etc.

    John

  6. Melissa says:

    First, congrats on being with your partner for 11 years, that’s great! :)

    Second, I know *exactly* what this feels like. There are times when I feel like I’m a burden to my husband. I’ll go hide in the bathroom and cry so he doesn’t see how upset or sore RA can make me. I try really hard to not let it get to me, but sometimes I need to just get the bad feelings out to move on.

  7. Riana Ebonrai says:

    Thank you for helping me to see things differently. I hadn’t thought about these things this way. I do try to do what I can, but it feels like so little to me; my family tells me how important it is to them, but it’s hard for me to believe it.
    I guess what’s happening there is that we have different values on things–I don’t value the time I spend listening to them and empathizing with them as much as they do, so it’s hard for me to imagine it’s as valuable as say, washing dishes or folding clothes. But to them, when they’re lonely and going through things, I guess it’s worth a lot. I’m going to have to remind myself of your post often, I think, but hopefully I’ll eventually get there. :) Gentle hugs to all fellow superheroes!

  8. Dawn says:

    Yes, I certainly DO feel like a burden ALL the time. It gets me upset, I cry a lot over it, etc. I have Rheumatoid Arthritis, Fibromyalgia, Cerebral Vascular Disease (which has the joy of SEVERE hospitalizing Basilar migraines because of all the lesions on my brain from the RA), Prothrombin Mutation Heterozygote (hyper blood clotting disorder for which I have to take Coumadin every day & test once a week) and 2 days ago I was diagnosed with Emphysema and I have NEVER smoked a day in my life. I had mobility problems already but the CVD mimics symptoms of MS (so, I walk like I am drunk a lot [balance probs], drag my left foot [which leads to my falling-about twice a week & I've already broken my right hip in 2 places], incontinence problems, tremors, severe vision probs (mostly double vision), etc…. Now with the emphysema, I have a nebulizer I have to use all the time plus 2 different inhalers. We’ve been having to take my wheelchair everywhere we go cuz I just cannot walk for very long. It just sickens me. I never thought at 45 I would be staring death in the face (but I never thought I would have had RA for 24 years by now either). Well, I have been proactive and already planned my cremation details, picked our urns, and planned my celebration of life partay!!! I’m going out with a bang!!

  9. Brandy de Cusack says:

    I often feel like a burden but mostly I feel that way because of other people’s attitudes.

    Take work, for example. Because I challenged an unfair demand which will put my health at risk I’m now in the position of having to take legal advice to protect my job. I’m also having to be careful what I say in emails and make sure my work is of an extremely high standard because I know the second I’m a financial burden they’ll get me out on a capability procedure. It’s vindictive and discriminatory but I’ve a hell of a fight on my hands.

    And I work for a charity.

  10. Laura says:

    I used to feel a burden, in that transition from being a child with Still’s Disease to an adult with Still’s Disease there were many things I found hard to deal with. But with those years well behind me, I have realised that I am who I am (and who I am needs no excuses lalala). Luckily I have a lot of support from friends and family, anyone who wasn’t supportive has been lost along the way…but I agree, usually it is other people’s bad attitudes that trigger the sense of being a burden and if they do, maybe it’s time you show them the door.

    Great post as always,
    L

  11. SKRDad says:

    When I talk to my wife about how I worry about being a burden, she always asks me to turn it around. If the sick one were her, would I not stand by her and do my best for her? Would I think her a burden? Because fair is fair. She knows that she is the light of my life and I would do anything for her, how can I think it would be any different for her?… I won’t lie, it isn’t always easy. But I believe her.

    The hardest thing for me is that when I say “tomorrow, I will ___” then I am never sure that I will be up for it tomorrow. I hate it. I used to be the most dependable guy you ever met. If you needed my help, you had it. If you were counting on me, I was there. You could set your watch by me… That has of course changed… A bit. For the most part I am still me and I do my best to be that guy…

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