I am More

Look at the image above. What do you see? Do you see loss in the bare branches or do you see joy in a sunny fall afternoon?  These past few days I have been thinking about how I see myself and the way my self-perception impacts my response to other people’s needs. So often I get caught up in my illness and its impact on myself and my family, but I am not lupus and fibromyalgia. I am a partner, a friend, a daughter. I am capable. I am kind. I can offer the people I love more than the daily lupus liturgy. I am more than a body with an illness.

Positive self-perception is vital to recovery. A quick google search (key words: self-perception and chronic illness) yielded a well-spring of journal articles about the role that self-perception and self-esteem play in relation to health outcomes and  the recovery process.

Interested in reading more about chronic illness and self-perception? 

Emotional Dimensions of Chronic Disease by Jane Turner and Brian Kelly (Feb 2000). This is an article about the impact of emotional status on chronic disease outcomes published in The Western Journal of Medicine.

Grieving Chronic Illness and Injury – Infinite Losses by Kate Jackson (July/Aug 2014). An exploration of grief and loss surrounding the life changes that accompany a chronic illness diagnosis published in Social Work Today.

Dealing with a chronic illness or having a family member who experiences a chronic illness is horrible. It sucks. When a chronic illness is in an active phase most internal and external resources are spent focused on the illness. That is my experience.  I do a full body scan first thing every morning for pain and stiffness. When I look in the mirror, I see my weight gain from the medications and inactivity, the butterfly rash on my face, and a woman who had a good job and resigned because she was too weak to overcome the symptoms of her own illness.

I can hear my husband’s voice challenging that last statement, but it is true. That is the self-perception that I wrestle with each morning. I wondered if this was common for other folks so I took a brief sojourn through the blogs of people who write about chronic illness. I found piece after piece about how the disease has taken over every aspect of their lives and the impact it has on the way they perceive themselves and others. A common theme in both my own thought process and the blogs I read was how the illness defines the person. I tend to define myself in terms of my experience with lupus and fibromyalgia, not as a whole person experiencing a disease process.  I know that when someone asks how are you? the first answer that springs to my mind is how my symptoms are that day.

There is an inherent self-focus that comes with chronic illness and chronic pain. When your own body is rebelling against you it is difficult to see anyone else’s pain.  There isn’t a lot of energy left when the day-to-day is taken up with medications, side effects, pain, work or lack-there-of, physician appointments, and the fear of what comes next. It is why some medical professionals don’t like working with chronically ill and chronic pain patients. I know I am not a barrel of laughs to deal with because for me there is no good answer to the challenges I face, no answer, no cure, just mitigating symptoms. That doesn’t stop me from asking for answers because the illness and the pain are disruptive to my life.

My experience has been that the longer this  flare goes on, the more I see myself as a burden to my husband and my mom. After all, they are working and supporting me and I am sitting at home, taking pills, and going to appointment after appointment just to hear “give it time, it will get better.”  I become so focused on getting better that I forget there is a life outside of the chronically ill shuffle.

I am learning that there are times to self-focus and times to get out of my own head and focus on someone else. When is that exactly?  I don’t have a good answer to that question. I  try to take a break from the disease talk  and point my energy toward someone or something else each day. I make dinner for Jamie (husband of the millennium), I snuggle the dog, or talk to my mom or a friend about their life experiences. If all I can manage is to say “I love you” or  “how was your day?”, I do it.  I challenge everyone, chronically ill or no, to do something for someone else, even if the most you can do is hold a door open. Reach out to someone  with no expectation of having your need for support met at the same time.

Doing for others feels good. It sounds selfish but it is true.  I have found that doing stuff for other folks helps me in creating a positive self-image.  My experience has been that giving time and/or engery to someone else without expectation of return usually ends up yielding a greater feeling of being supported myself. Please do not read this thought exploration as me implying that asking for help and support is a bad thing. Asking for help and support is great and strong and necessary. I am saying that it is important to give a little bit of ourselves back to those who give to us, not only for their sake, but for ours, as well.

It is important that our self-perception includes things other than lupus patient or chronically ill.  If self-evaluation includes things like good listener, kind, and, generous instead of just sick and unemployed then how much easier will it be to look in the mirror and see a person who is worthy of getting well and staying well?

Be kind to yourself by being kind to others and allow yourself to see past the illness. Giving back means being more than a body with a disease. I am more than my illness and my chronic pain and so are you.

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