Coping with The Daily Grind: Challenges of Chronic Illness

Last week, in my Mid-Week Balance blog round-up, I shared a post by a talented writer who blogs under the name Dr. Snit.  This particular post was about some of the challenges that many patients face in getting their basic medication needs met.  That post struck a chord with me, and it resonated with an issue that I explore with many of my own patients.

Managing an Illness Can be a Full-Time Job

Unless you have been seriously ill, or been a caregiver, you may not truly understand the daily burden that serious & chronic illness places on you.  Here are just a few examples of challenges my patients often face:

  • “I have to plan my life around doctor’s appointments–they make even basic activities really challenging.”
  • “Coordinating my oxygen equipment & supply is so hard.”
  • “My family doesn’t understand why a trip to the grocery store exhausts me.”
  • “I feel like I have to “out” my diabetes so that people at work know how to react in an emergency.”
  • “I can’t do anything spontaneously because I have to plan ahead for my medication, insulin, etc.”
  • “It seems like I have to do battle with the insurance company every month or so just to get routine care.”
  • “We have to be so careful about new plans because my partner’s recovery has been slow.”

Of Course You Get Sick of Being Sick

If any of those examples, or some variation of those examples, sounds familiar to you, then I am guessing that you have also felt like this, “I am sick of dealing with my illness.  I just want to quit and let someone else manage this for a while.”  That feeling makes perfect sense to me.  What a healthy person may not understand is that, when you’re facing serious or chronic illness, there can be a huge amount of effort that goes into feeling (or appearing to feel), just “okay.”

When you know that you are in this for the long haul, it makes sense that you may occasionally want to quit managing your illness.  I think that it is important to note that this does not make you a “bad patient.”  It makes you a normal human being, who might get frustrated or fatigued managing a complex illness.

Coping with Fatigue

The problem is, that, even when you’re totally sick of the daily details of being as healthy as you can, a chronic illness often doesn’t respond well to being ignored.  If you’re a Type I diabetic, just skipping your insulin isn’t a great option.  Neither is going without your oxygen if you have COPD, or bailing on a chemotherapy treatment because you hate the way it makes you feel.  That’s one of the reasons this can get so hard–it often doesn’t feel like you have a true option to “rest.”

Here are a few small suggestions that my patients and I have worked out over the years to aid in coping with “illness fatigue:”

  • Call in some extra backup.  This can be a partner who might do your overnight blood sugar checks, or a friend who might take you to chemo when you’re feeling particularly wiped out.
  • Plan a treat for yourself.  This can be as small as a movie, or as big as a spa day or vacation–whatever fits into your budget and your care plan.  The key is to deliberately do something that is intended to brighten your day.
  • Create a “paperwork break.”  Yes, you need to stay on top of your records and your insurance.  But unless you are about to run out of a critical medicine, you can probably give yourself a few hours that you back away from the paperwork–just be clear to yourself that this is about your self-care, so that the break counts.
  • Try to do something that feeds your energy level.  This might be getting an extra 30 minutes of sleep, or eating some fruits and vegetables, or taking a walk–whatever your current health status allows.
  • Reach for support.  This can be an online group, or a local group.  It might be a faith community, or your family, or great friends.  It might be a therapist.  Just help yourself remember that you aren’t doing this alone.

I’d love to hear more of your suggestions in the comments.

 

Image Credit: Photo by quinn.anya via Flickr

8 thoughts on “Coping with The Daily Grind: Challenges of Chronic Illness

  1. Excellent … Totally where I am at in my tx. I even asked myself today, “how do I take a break?” how can I take a vaca from this disease?” sadly, the answer is …. Not a long term solution. But, you gave some short term ideas I am willing to try…

  2. This is a point sometimes missed by those in the medical world and people who are generally healthy. We talk about “compliance” like it’s easy to do and blame patients when they fail, but it’s really hard to keep up with all the things you have to do to manage long-term illnesses. This is true for the patient and the caregiver. Thank you for the reminder that these feelings are normal, and that there are concrete ways to cope.

    1. Rachelle,

      I think that everyone who uses the word “compliance” should have to live with a high-maintenance chronic condition for a week. Ideally, when we are compassionate with ourselves and our patients, we create spaces where creative, caring solutions are possible.

      Warmly,
      Ann

  3. Such a great post. As a person with a chronic condition, I try to keep all my appointments on a set day of the week whenever possible. I also find laughter is a great break from focusing on an illness so I like to treat comedies.

  4. Having been diagnosed with a chronic leukemia I live this struggle. I have found on-line support (disease-specific) to be really helpful. Sometimes I take a break from it though when I am doing well. It is nice to have that support when I need it, and to selfishly step back when feeling well. One of the most difficult aspects for me is the cost. Medical bills for me run $15-20 K a month. This has been my biggest stressor. Since, barring supernatural healing (which I don’t rule out), I can expect these kinds of bills for the rest of my life. That is one place faith is critical for me. I also seek out financial help. Many drug companies offer financial assistance. Needy Meds is great resource for people to find out what types of assistance are available. Personally, I want to say a huge THANK YOU to The Leukemia/Lymphoma Society.

    1. Barb,

      Thank you so much for sharing your story. I know that your experience is shared by so many, and the more voices we can have raised to move for change the better. Thinking of you.

      Warmly,
      Ann

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