Do you tell yourself your chronic illness would be more manageable if you had more control over the rest of your life?
Do you believe that if you could find a job, influence your boss or be more effective at work, you’d feel better?
Yet, do you feel powerless to take action, worried it might not be the right one? Do you believe that the only thing you have control over are your own emotions, so you focus on only that?
Chronic illness can do that. Even the most determined people can feel powerless to impact their lives when unpredictable and difficult illness gets in the way.
But I humbly disagree that there’s nothing you can do. I fall frequently. Poor balance and numb feet (from living with multiple sclerosis all these years) must contribute. Last night I took a really nasty fall – the 3rd in 6 months. This morning the pain was so bad I was sure I had broken something. But experience told me it was muscle not bone pain. I forced myself to exercise lightly (stretching, small steps, shorter time) to get blood moving. Reading my email, I forgot how painful it is to move my right arm. Writing a note to a client, I realized I could even type with the arm, although I didn’t think so when I woke up!
I’m not healed – the bruises will grow and I’m limited. But I don’t feel disabled (from these injuries at least!) or sorry for myself.
Now I’ve read (through a fellow traveler, Kathy Ibettson, who produces a terrific newsletter about multiple sclerosis items of interest) about a study that examined the coping mechanisms of MS patients living in Northern Israel during the Lebanese War affected their disease course.
The results show that “ those who used ‘direct coping and planning’ – preparing shelter areas, adjusting medication appointments, stocking up on food and medicine – did better than those who focused on the situation on an emotional level, using relaxation techniques, support from others or prayer.”
“Patients who focused their coping on emotional well being when a more direct approach was necessary, suffered more flare-ups of the disease than patients who identified the challenges that the falling missiles were presenting, and regarded the situation as an opportunity for planning and direct action,” noted Professor Eli Somer, study author.
This means that people who took action to improve their situation did physically better than those who relied on internal, “transformative” experience. Although this research was on patients with multiple sclerosis, I suspect we’re safe generalizing this to all chronic illness.
Are you trying to figure out a new career, find a new job, tell your boss you can’t work at this level? Do you wake up thinking: Today I’m going to do something about this“? But instead, bury your head under the covers.
How is that going for you?
You might ask yourself, “What action can I take?” And if you can’t figure that out or get motivated to do that, consider this research from Stanford Medical School that shows that people with chronic illness experience significant benefits from coaching.
What works for you when you’re in a difficult, dis-empowering situation? How is it going?
Diana says
I do think that taking control of the situation helps. I’m also coping with numb feet, balance and vision problems due to Lupus and now find out I have a 47% kidney function. My action steps are to find out what I can do to keep it from getting any lower and lose the weight I gained in the last year due to medication and plantar fasciitis. I’m still working.
Rosalind says
You’re always “working”, Diana. That’s what keeps you going, isn’t it?
Jenny says
This is very interesting to hear. I get very annoyed at myself because I don’t meditate enough, focus on those internal transformative things. When I can I just want to ‘do’ things. Maybe my approach isn’t too bad after all? Yet we read so much about the positive impact on health through meditation? confusing …
Ricky Buchanan says
I balance both, I guess. I do do meditation/graded relaxation but I also do “action” things to benefit my wellbeing and general life state.
One thing I think goes well with the ideas of chronic illness and actions is SARK’s concept of “micro-movements”. This is the idea of breaking down actions into the smallest possible units – that even if you only manage to type 2 lines or read one page or something else that may seem “ludicrously small” it’s still an achievement. I think it’s very easy to get overwhelmed when one is sick because even relatively small things seem insurmountable – and one way around that is to stop worrying about surmounting all of it, just worry about the first tiniest part. Make one phone call, write one email, whatever. Then pat yourself on the back and move on to the next micro-movement!
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Maria says
I didn’t get to this post until tonight and it is right on target with where I’ve been. I just finished getting certified in the Stanford’s Chronic Disease Management Leader training, which focuses on action towards wellness. Support research goes back and forth on what strategies are most effective and some studies suggest that it isn’t necessarily whether we receive support as much as if we “perceive” that we are receiving it. Bottom line is that wellness requires a balance in coping strategies – feel it, act on it, share it. That’s the mantra I often use with those I work with on achieving their management.
Great post, Rosalind!
Rosalind says
Thanks, Maria, for the feedback. I’m not familiar with Stanford’s training -but I”m going to look it up. What are you planning to do with the certification?
Maria says
It is their Chronic Disease Self-Management Program that Jason speaks of in his blog post. I am now certified to lead the classes and will be doing so all over the State of Oregon and SW Washington. I have also taken the class as a participant and recommend it highly to anyone, newbie or veteran of living with chrinic illness. The tools are standard, but the reinforcement you get during the class in using these tools and strategies is extremely valuable!
Rosalind says
Thanks for explaining – and I hope others who live in the area pursue this.
Ricky Buchanan says
I have decided my cat is the master of micro-actions and should be my role model – he moves a bit towards his food, discovers a patch of sunlight so has a 5 minute nap when he has the chance, then 10 licks worth of his bath before finishing moving towards his food. Takes advantage of opportinuties to get things done (lying in sun when sun is found) but also not afraid to stop and rest when the opportunity arises.
Perfect role model!
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Rosalind says
I love it. There is something to be learned here. Conservation of movement and careful consideration of what matters.