My partner and I arrived fashionably late to Saturday’s MS support group meeting. Not only was that okay, it was completely understood. She had needed to sleep — but once she was awake, she was rarin’ to go.
I am thrilled that she likes this group and wants to go to meetings!
We each got a packet from the Multiple Sclerosis Foundation. Next month is MS Education and Awareness Month. I now have an orange MSF wristband to go with my orange Caregiving.com wristband — along with an MSF lanyard and several flyers.
One flyer in particular resonates with me as a caregiver, so I reproduce it below. What follows was written by Lara M. Stepleman, Ph.D., a licensed psychologist and Professor of Psychiatry and Health Behavior at Georgia Health Sciences University. She specializes in adjustment to and living fully with chronic medical conditions.
Adapting to and Living Well with a Chronic Illness
10 things you probably already know about living with an illness but sometimes forget:
1. Adjustment doesn’t just happen once, it happens over and over. Few, if any of us, are ever finished adjusting.
2. Adjustment doesn’t just happen to the person with the disease, but family and even close friends and co-workers may undergo adjustment too.
3. There is no one right way to feel when you get a diagnosis or at any point in the disease process.
4. Adjustment is tied to coping skills that we use to live our best lives within our current circumstances. Some work better than others and being skilled at several is better than relying on just one or two. (Examples: information seeking, goal setting, denial, detachment, emotional release, recruiting support, realistic optimism, etc.)
5. Using your old pre-illness ‘yardstick’ to measure success will almost always result in disappointment even when you make major strides in your post-illness life.
6. Acceptance is not surrender nor is it always feeling ‘good’ about your current situation. In fact, ‘passive acceptance’ is generally not associated with good physical and emotional health outcomes.
7. Setting realistic limitations and calculated risk-taking are needed for positive growth after illness.
8. Your situation may not be the ‘worst’ when compared to others, but this does not invalidate your own struggles and feelings. It is also true that illness severity does not always correlate with level of difficulty in adjustment.
9. Your mental health (especially ongoing untreated anxiety and depression) can impair the adjustment process and even bring it to a halt. Mental health professionals can be partners in the adjustment process.
10. Even when you do everything ‘right’* to take care of yourself, some days (weeks, months) may still be incredibly difficult. Being willing to experience physical and emotional pain within the context of a full life may result in greater life satisfaction than fighting or avoiding it.
* PS: You won’t do everything right, so a little kindness toward oneself is helpful too.
Change Your Mindset and Enhance Healing
I use this easy-to-remember formula — Stop, Drop, and Roll — to help explain self-management techniques related to mindset that can contribute to emotional and physical wellness.
Stop: Stop and just notice nonjudgmentally the health-related thoughts going through your mind and your physical and emotional responses to them. Rather than pushing away or stuffing inside the negative thoughts and feelings, try bringing an intentional, curious, and open attitude to your internal experience. This practice of nonjudgmental conscious awareness, often referred to as ‘mindfulness’, increases one’s ability to live in the moment, accept oneself more fully, and manage stress. Mindfulness techniques have been used successfully with individuals living with chronic pain, HIV, diabetes, and many other illnesses to help reduce disease symptoms and increase quality of life.
Drop: Drop coping strategies related to your health that aren’t working or aren’t consistent with what is important in your life. For example, it is not uncommon for people to cope with a chronic illness or pain by avoiding or limiting their activity outside the home in spite of strongly valuing social interaction and community involvement. They may tell themselves, “I won’t be able to do it,” or “I’ll feel worse if I go out” (even when a physician has advised it is safe and possibly beneficial to be more active). This level of disengagement in life almost always increases suffering. Having physical limitations and having a rich, satisfying life are not incompatible with one another, but often people think and act as if they are.
Roll: Roll with challenges related to health. Health is not a static concept over a lifespan and having the emotional flexibility to adjust to change is crucial. When dealing with illness, there will be better days, worse days, and sometimes downright awful days. Individuals who approach illness with a willingness to experience emotional and physical pain as part of living a full life often report higher life satisfaction than those who attempt to avoid discomfort at all costs, even when physical symptoms don’t improve.
“Although the world is full of suffering, it is also full of the overcoming of it.” — Helen Keller