They don’t get it. No matter how many times and how many ways you explain what you feel, your lover, spouse, family, friends and acquaintances don’t get it. They never will get it because your condition is your lived experience not theirs. They can empathize. They might sympathize. But they can’t know your physical and emotional experience of disease.

Think about this please. If I told you something tasted like chocolate but you never tasted chocolate, how would you know what I was talking about? If I told you something smelled like roses but you never smelled a rose before, how would you know what I was talking about? You would only understand if you had the experience of tasting chocolate or smelling a rose. It is the same with disease.

Why do we keep trying? When we try to make others understand our experience we are often trying to make sense out of our situation. We are trying to validate our experience. We want others to know that it’s hard living in our bodies. Over time, our attempts to make others ‘get it’ chip away at our relationships. The disease dominates every conversation. More and more we see the world through the lens of disease. The elusive understanding that we so desperately seek escapes as we drive people away by our litany of symptoms and complaints.

Only when we become aware of what we are doing can we take steps to change. Accept that others may never ‘get it’ when it comes to your health. Once you have explained your condition, move on. Find other things to talk about. Find other things to think about. You are not your disease.
How much room do I give disease in my life and relationships?

(c) Linda Ruescher excerpt from Life Recycled: Creating a New Normal in the Face of Chronic Illness available on April 1, 2018

How sick are you?
How healthy are you?
What percent of you is sick?
What percent of you is healthy?

In Full Catastrophe Living, Jon Kabat-Zinn writes, “As long as you are breathing, there is more right with you than there is wrong, no matter how ill or how hopeless you may feel.” When we don’t feel well, we identify as being sick, period. We must guard against this all or nothing thinking. We are never one hundred percent healthy and we are never one hundred percent sick. Health is not an either/or scenario. Rather, health changes from day to day. Health is a continuum. Sometimes we have a hard time seeing that. On her worst days, a dear friend of mine would exclaim, “At least my eyelashes don’t hurt!”

Right this minute you are reading, breathing, your heart is beating, blood is running through your veins, digestion is happening, and so much more. Take inventory. How many things can you find that are right with you this very moment? Every time you feel despair, check in with yourself to discover what is right.

There is more right with me than there is wrong.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness (Release date April 1, 2018)

Baby Steps

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.
Alice: ...So long as I get somewhere.
The Cheshire Cat: Oh, you're sure to do that, if only you walk long enough.”
-Lewis Carroll, Alice in Wonderland

We want to get better. We want to go back to our pre-illness self and our pre-illness life. We want to go back to a time when our days were not filled with pills and doctors’ appointments, procedures and blood draws. Since we can’t go back, the only way to go is forward. But where are we going? We are going to do whatever we need to do to live the best life possible. We are going to be sick well.

Goals are great. Goals mean that we have hope. When chronic illness comes to visit, we have a choice. We can hold onto our old goals or we can make new goals. In 2003, the loftiest goal I could imagine was getting out of my pajamas every day or at least changing to clean pajamas by dinner time. I learned that to achieve the goal of getting out of my pajamas, I needed to take a series of small steps, resting after each one. Decide what to wear. Rest. Find the clothes. Rest. Take a shower. Taking a shower was huge. I had to rest for at least an hour. Get dressed. Rest. Be proud of myself. I did it! The first step is always getting started. Every small triumph inspires us to go on.

What new goals do you have now that you have chronic illness? Pick one goal that is achievable. Make it a small goal. Make a list of all the steps you must take to get to the goal. Go back over the list and break each step into smaller steps. Work on just that one goal, one tiny step at a time. Setbacks are not failures. If you have a setback ask yourself what you learned. Then carry on. Give yourself permission to keep on trying. Life with chronic illness is about progress, not perfection.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness Release date April 1, 2018.

Resolutions

Do you make New Year’s resolutions? Do you keep them? Do you tell yourself that this year is going to be different? You are going to lose weight, get fit, get organized, or achieve some other lofty goal? Do you beat yourself up when you fail? Would you like a resolution that really works, one that improves your life daily? I have one for you!

Every day, several times a day, ask yourself, “What can I do to take care of myself right now?” When you are frustrated by limitations on energy and ability, when you are struggling to get through the basic activities of daily living, it’s easy to forget to take care of yourself. When your to do list is longer than you are tall ask yourself what you need to do to take care of yourself. When friends and family make demands on your time and energy ask yourself this question. Write it down. Hang it up where you will see it often. Set an alarm on your watch or phone.

Taking care of yourself is not selfish. Depleting yourself is the thing that is selfish. You cannot pour from an empty cup. You cannot give what you do not have. Remember to put the oxygen mask on yourself before helping others.

What can I do to take care of myself right now?

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