If there were a blues song about living with chronic bad health, I bet most people wouldn’t sing about ‘love gone bad’.   No doubt, holding onto relationships is hard with chronically bad health.  I’ve worked with people who blame illness for failed relationships and there’s much to be sad about.

But from what I’ve seen, we cry most frequently about whether to participate or not.      “To be or not to be?”  wondered Hamlet.   He knew that choosing between two bad choices wears a person down.

The questions here are:   Should I do this or not?  Do I feel bad enough not to go to  this  meeting, this appointment  (whatever  noun fits)?   Will I make myself worse if I do go?  Will I hurt myself–in my work, in my relationships – -  if I don’t?   It’s probably the most  frequently discussed issue my clients bring up in our meetings.

The problem is that if you think this symptom, that’s suddenly popped up and/or gotten worse, could negatively impact your ability to deliver, how can you be sure?   You wonder if it might improve sooner rather than later?  Or maybe, you’re thinking, ” I don’t feel that badly now, but what if  gets a lot worse?”

Questions like these make it tough to feel comfortable making a decision as whether to show up or not.  Phrases such ase, “Maybe I should push myself harder.”  “Am I wimping out?”  “If I really cared about this, I’d do it.” pop onto your head. And that’s just you talking.  Never mind what others might say about your decision.

Early in my work, I created a template for clients to identify symptoms and the degree to which they impact performance to help them make decisions like this more easily.  But I learned soon enough that the check marks aren’t the whole story.

Recently, a urinary tract infection made my usual pain and fatigue worse.  On a day when I was to meet with a small professional group who wanted to know more about my services, I woke with a cold.  The presentation required energy and I was the spotlight.  Not a good position when you feel lousy.  The good news is that  I was to speak at the group’s weekly meeting  and they weren’t assembling just to hear me.

The decision should have been easy.   It wasn’t.  After an extensive internal debate, I decided not to risk doing a poor job and making my health worse.  But how to explain with so little notice that I’m unable to present because of a cold?   What could I say without giving more information than necessary?

That’s when I realized this was a teaching moment for the client.   In fact, this was the  topic of my talk, “Working while living with unpredictable health“.

I called and explained that I’d already had an infection that had weakened me but had been manageable.  When I woke that morning with a cold,  it put me in much worse shape.  Because I didn’t think I’d do an effective job, I thought it best to reschedule.  She was fine with this. (But I’ll feel better  when she reschedules!)

Although I’ve had many such disappointments and some that were much more painful, it was  disappointing to have to say, yet again, “No, I can’t”.  I journaled, I focused and I let myself be with the feelings that inevitably come up when I have to make such a decision.   In fact, the cold never got worse and I felt better as the day went on.

It’s rare that the picture is clear regarding how bad or good I feel, what I can or can’t do, and when to push myself to show up rather than stay back.   My life as a person living with chronic illness doesn’t fit into neat boxes. Does anyone’s?

The one thing I do know is that  it’s an ongoing journey, taking work, hope and as much resilience as I can muster.

 

14 Responses to “Singing the chronic illness blues?”  

  1. 1 Melissa Marsh

    Thanks for this. I have been pondering this very topic as I’m dealing with a (probable) rheumatoid arthritis diagnosis. I push myself too much, I think, and then I end up worse the next day. But I don’t want to be thought of as a wimp. I have missed four days of work in the past three weeks due to my RA and I’ve felt guilty for each one. I don’t want to be weak and a quitter – but neither do I want to harm myself even worse. It’s a tricky balance and one that I hope to get better at as time goes by.

  2. 2 Rosalind

    New diagnoses are really life changing, even if we’ve been living with symptoms a long time. Balance is a key word. Also noticing what words we use to describe ourselves- is this you talking about yourself or what you fear others will think of you when you say weak or quitter. What does that really mean to you? I don’t know how much easier it gets since it’s all a moving target. I do think it’s important to have as much support as possible, professional (as in therapists and coaching) to figure out what we value and work to hold to that. I wish you strength and resiliene with this.

  3. 3 Lotty

    I am having CBT for this very issue, I find the ‘should I/shouldn’t I’ dilemma one of the toughest things to work out. I think what I am learning is that what matters most is not if I push myself, or allow myself to rest, it’s that I don’t beat myself for whatever my decision is. It’s a hard lesson to put into practise, but I’m trying!

  4. 4 Rosalind

    I’ve adapted some CBT techniques with clients and find it very helpful for stopping the thinking. I’ve also seen that it’s helpful to have people around you encourage you to adapt new thinking strategies as well — and to have the support of a therapist, coach — or whomever you can find. I wish you well with the practice!

  5. 5 Jason Reid

    Thanks Rosalind. When people ask me what is the most difficult thing I have to deal with when living with a chronic illness, the answer is always easy – unpredictability. Those with good health take for granted that imaginary crystal ball where they can look into the near future and know with a fair degree of certainty how they will feel. After 30 years of illness and many coping skills later, I still have to make these tough decisions every day. The decisions don’t get easier, but I try to give less and less energy to my inner critic.

  6. 6 Rosalind

    Yes, the inner critic can get pretty loud, can’t it? Thank you for your thoughtful comments,Jason.

  7. 7 Karen

    Thanks – you hit the nail on the head. The daily decisions to do or not to do. Or even to try to do. I didn’t realize how much space that question takes up in my head all the time. It requires such forgiveness for a body that has a mind of its own.

  8. 8 Rosalind

    I love your line “… how much space that question takes up in my head ….” Thanks for sharing.

  9. 9 Leigh Peltier

    This is timely – as many of your posts are. I feel fine. My RA is probably in remission and the joint pain and inflammation seems mostly under control. The fatigue is such a big issue still. I look fine, but it’s tough to push every single day and I guess I’m finally to the point where I’ve realized that I’m tired of pushing. I’ve been pushing for many reasons for many years and I’m exhausted. Burnt out. There aren’t many options for me because the economy and nasty divorce have cut into my savings so that I only have retirement savings left. And I’m too young to retire.

    So I guess I figure out how to deal with it and continue moving on. I’m hoping by next year to have the capability to work more from home, but that depends on my company equipping me with the tools. I’m prepared and ready on my end.

    OK – gotta run. Gotta go see a client. Thanks Rosalind.

  10. 10 Rosalind

    Pushing is tough. That feeling is so draining. And it sounds like you’ve been pushing on many fronts. I wish you the best that in working out a better situation at your work. Get help, get support — doing it alone can be tiring!

  11. 11 Kim

    I just found this site, and can tell you that I’ve felt this way for half of my life- always been a fighter and that’s how I’ve survived. I’ve spent the past 20 years (or maybe longer) trying to be more competent than everyone else, trying to prove that I was worthwhile despite the kidney disease I’ve had since a child. I was on social security for a good 15 years, and let me tell you, it was hard to be a young person and be forced not to work for so long just so that I could have access to medical care.
    Now that I have a transplant, and am doing much better, I have a full-time job now, and am off of social security. But because I’m immuno-suppressed, I do get sick quite frequently. Because of reading your blog now i’ve decided to tell my boss, and just “fess up”. I need her to let me work from home from time to time because sometimes I’m just too tired and messed up to go into the office.
    Anyway, thanks for the work you are doing – very valuable, indeed!

  12. 12 Rosalind

    What a story you have. When you tell your boss, consider whether it’s ‘fessing up’ or if there is a way that you can phrase this/think about this so you put your best ‘you’ out there. Good luck.

  13. 13 Carla

    I deal with decisions like this every single day, both in work and in social situations. It’s never easy, but at least once I decide I usually stick with it and don’t feel guilty.

    I try and frame it by saying that it’s a decision I am making, not something that happened TO me.

  1. 1 Work and Chronic Illness | phat50chick with ra
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