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The Invisible Burdens of Chronic Illness

The Invisible Burdens of Chronic Illness

Rheumatoid arthritis is an invisible illness. Most of the time, the impact that RA has on my daily life isn’t visible to other people. However, once someone learns that I have RA, I think they can at least try to conceptualize the impact that pain and fatigue have on my daily life. Someone without RA may never truly know the full extent of these physical burdens, but most people understand what it feels like to be exhausted or in pain, so at least they can try to come close.

But most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money that goes into attempting to maintain my health.

For example, one morning while I tried to clean up from breakfast and keep my children from hurting each other as they fought over some toy train tracks, my husband and I got into an argument about yet another medical bill. We were arguing because the bill was difficult to understand, as they always are. Since our health insurance comes from my husband’s employer, I needed him to get me some information to help me figure it out. My husband was at work and hadn’t found time to get me the information, which is why we were arguing. Over text message. Which, as an aside, is not a way I recommend arguing with your partner!

That same afternoon, I sat down during the single, golden hour where both of my children nap at the same time to call my insurance company. While it is annoying for anyone to have to spend time talking to their insurance company, you probably can’t understand what a sacrifice this is for me unless you are a parent yourself. Most days I am the sole caretaker of a pair of toddler boys, ages 3 and 1. They are rambunctious. They get into trouble. They require my constant attention and, on most days, more energy than I actually have. The single hour a day where they nap simultaneously is the only time I have to myself. To think. To take a deep breath. To drink my tea while it is still hot. To pee alone. But it is also the only time I have to get things done.

It took over an hour for the representative from my insurance company to offer me an explanation that made a modicum of sense. Though I had logged into the “member dashboard” and had several bills in front of me, it turned out that the representative was not able to log into my account to see the same thing I was looking at. For some reason, she could also only see medical charges that had gone towards my deductible, not prescription charges. For that info she would need to contact another department, and that would take 48 hours. So we had to make do with her attempting to answer my questions while we looked at different information that was apparently incomplete.

In the end, it turned out to be pretty much a waste of my energy and precious childfree time. But medical bills make up a huge portion of our family’s budget, so I keep careful records. It’s not even the end of the year yet, and we have already spent almost $12,000 on medical expenses – not including our premium payments. Though we are a family of four, 80-90% of the money we spend on medical bills goes to taking care of my chronic illness. I know I have to do my due diligence when I have a question about billing to make sure that the large sums of money we fork over for my medical care is actually being spent and credited the way it is supposed to.

I try not to think too much about how much easier our day-to-day lives would be if we had an extra $1,000 a month to spend on whatever we wanted. Instead I clip coupons for our groceries. I shop for our boys at consignment sales. I almost never buy anything new, especially for myself. I spend my extremely limited time and energy wading through medical bills and fighting with my insurance company. These burdens – time, energy, money – are invisible to most people, but to my family they are simply part of the reality of life with a chronic illness.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Patricia Darstein
    1 year ago

    Very true. I feel everything stated. I have 2 boys also. Thank God they are older now but exactly the same age span 2 years apart. I was on so many steriods at that time that I couldn’t sit still even if they did nap. I get the bills too. Its just terrible. Now my boys are 9 & 11 and we also can not buy NEW clothes. The only “New” is their sneakers which cost over or near 100.00 due to them both having to wear men’s sizes now. It’s bad enough to have a chronic illness, with chronic pain, and chronic bills and extended family that rejects you because you’ve been on so many steriods your personality changes. RA effects every single aspect of your life…for life. It doesn’t go away. Just as children grow they offer a new set of different problems as so does this disabling, debilating disease.

  • Richard Faust moderator
    1 year ago

    Thanks for writing Patricia. Sometimes with a chronic condition like RA the stress and emotional aspects of the condition take a backseat to the physical, but they are very real and important part of overall health. This article form our editorial team looks at managing these issues: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/. Know that you are always welcome in this community anytime you need some support or just to vent a little. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • swbw
    1 year ago

    This is so true! So many medical expenses and time spent managing the insurance and out of pocket costs. There was a time when my husband resented the money spent on my health so that was also an added burden for me. Now he is on board and helps so much! I don’t have small children anymore in my house…but I am a grandmother. I never dreamed that I would not be able to be the grandma I want to be…sometimes I just can’t see them or attend a recital and it breaks my heart. Most days I have to choose one to three things that I hope to accomplish so needless to say, my house needs a lot of attention. I have just learned to look the other way. However, I can always look around and realize that there are many others who are dealing with worse scenarios…so, I am glad and thankful for what I am able to do.

  • Richard Faust moderator
    1 year ago

    Thanks for writing swbw. As the husband of someone with RA, glad to hear that your husband is now helpful. You mention learning to deal with not getting as many chores done, so I thought you might be interested in this article from one of our contributors on this topic: https://rheumatoidarthritis.net/living/seeing-the-basket-as-half-folded/. She notes “It’s tempting to be hard on myself and my lot in life during a flare, but I’m reminding myself that I can see that glass of water as half full, and see that basket of laundry as half folded.” Thanks for being part of this community. Best, Richard (RheumatoidArthritis.net Team)

  • SydneyH
    3 years ago

    This is so true. I was recently diagnosed with RA and the things that worry me the most aren’t so much the disease but the money and insurance needed to deal with the disease. I’m afraid they won’t always be there. I’m barely paying the medical bills now. Then there’s the time. I spent many hours the past two weeks trying to straighten out a prior authorization snafu for one of my medications. Some days dealing with the RA seems easier than dealing with all of the other stuff.

  • BeckyKay
    1 year ago

    I have also found I use many hours managing insurance, referrals, and prescriptions. Some of the strategies that have helped me include:
    1. I changed my insurance plan so that I have a large deductible, which lowered my premium and let me set up a health savings account. I spend the same amount of money but it’s easier to manage because I either pay 100% of the bill (the deductible) or 0% (after I meet the deductible). No small payments to manage or track.
    2. Use a consistent set of physicians and make certain you take copies of lab results, x-ray reports, PT summaries and office notes to each physician. I even carry a set with me to appointments. This avoids duplicate tests and keeps everyone up to date. I never have to wait for a physician to locate information in their records because I have it with me.
    3. I use an HMO plan and have my PCP write a referral to my other specialists and for pharmaceuticals for a year at a time. Then I only need preauthorizations for big ticket items like surgeries and MRIs.

    I hope these might help others
    Becky

  • Mariah Z. Leach moderator author
    3 years ago

    Hi Sydney ~
    Sorry to hear about your recent diagnosis, but I’m glad that you have found our community! Please remember that we understand what you are going through and we are here to support you!
    ~Mariah~

  • Carla Kienast
    4 years ago

    I think you’ve hit the nail on the head. Managing this disease is, indeed, a full-time occupation. Sheesh!

  • huntman
    1 year ago

    We love Mariah’s perspective and efforts on behalf of RA: http://theraconnection.com/articles/patients-rising-voices-value-mariah-leach/

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