The Oxford Dictionary describes ‘self-image' as “the idea one has of one's abilities, appearance, and personality." The example it uses for how to use the term is: "Sickness is an affront to one's self-image and dignity." Those words are very true for anyone who is sick with any illness, medical disease or condition, but they are especially poignant for those of us with Periodic Paralysis. PP is an especially cruel and rare mineral metabolic disorder that is difficult to diagnose and understand and most often mistaken for mental illness (It is the “all in your head syndrome”). Diagnosing is not straightforward. It can take an average of 20 years (my own took over 50 years) because diagnosing PP is exclusionary; which means it is arrived at after all else is ruled out by testing for other conditions. Testing will always come back negative. If someone does not know they have PP and doctors do not recognize it, this is especially difficult to deal with.
PP is not a neurological condition but we are sent to neurologists because the symptoms look neurological. They give us drugs to treat our symptoms. The drugs, in turn, cause new or worse symptoms. Then we receive diagnoses for things we do not have and cycle of 'diagnosing insanity’ continues until they harm or kill us or we are lucky enough to find a doctor who understands. Many of us have had to diagnose our self and then set out to get a diagnosis. At this point we look even more mentally ill to the arrogant doctors who do not understand or care enough to try to figure it out with and for us.
Through all of this we get sicker, weaker, our muscle weakness progresses, we develop exercise intolerance and much more...all with no diagnosis. Our family members do not believe us they think we are faking. (If the doctors do not believe us why should anyone else?) We lose friends, some of us lose our marriages, employment or an education becomes more difficult and some of us must give up our careers…all with no real answers and no diagnoses. Who would not have a poor self-image of themselves while they are going through decades of illness, not being believed and tremendous loss???
A large majority of us who then finally do get a diagnosis are classified as to whether the diagnosis is ‘clinical,' which is based on the symptoms or ‘genetic’ based on DNA testing results. This is a new set of problems that really takes us even lower. We are discriminated against in the PP community. Just 9 years ago, I was looked down on for not having a diagnosis and then actually scoffed at me when I finally got my clinical diagnosis because I had ‘only' a clinical diagnosis for ATS based on my symptoms. Those with genetic diagnoses and the support group that was available at that time only allowed those with a diagnosis to join their group, but believe me, they wanted it to be a genetic diagnosis. I got no help and could get no answers for my serious questions. (This is why PPN now exists. We are here for everyone and especially to help with getting diagnoses and helping everyone naturally, not pushing the drugs, which are harmful to many of us.)
Many, regardless of a diagnosis or not, are still shunned by family members who do not understand, medical professionals who have never heard of Periodic Paralysis, co-workers, teachers, friends, neighbors. We are mistreated by doctors who do not understand and so much more. All that being said, it is not difficult to understand that those of us with symptoms of Periodic Paralysis whether diagnosed or not, have issues with our self-image or how we see ourselves. I am one of those people!
We need to take a balanced look at our emotional negative states, rather than becoming caught up in them. However, we should not ignore or deny the feelings, instead we need to notice and look at them, but not get immersed in them. For instance if we feel sad or angry, we can feel it and recognize it and then let it go. We should not feel guilty for having the feelings.
From Psychology Today
Seeking advice on this subject from my daughter who is a therapist, she suggested a self-help workbook that may be helpful. It is titled, Get Out of Your Mind & Into Your Life by Steven C Hayes, PHD. The cover explains “You can learn step-by-step how mindfulness and acceptance can help you: overcome depression, transform emotional pain, free yourself from negative thinking and self-judgment, commit to what you care about and live a life you value.” It teaches how to use the new Acceptance and Commitment Therapy; how to repair our mind after it has turned on us.
The final ingredient I have chosen to discuss, which I believe can help us to rebuild and maintain our self-image is about having something to look forward to. No matter how large or small it may be, we must look to the future. I have little to look forward to each day as I sit in my recliner, but I find little things. For instance right now, as I look out my windows I see our beautiful but bare forest. Although it is slightly above freezing, the sun is shining. I am hopeful that spring will soon be here with warmer temperatures and blossoms and leaves on the trees and bushes. It will be warmer and I am looking forward to getting in my power wheelchair and going for a “walk“ down our road. We have no family that lives near us so I am also looking forward to some of my family members possibly visiting later this year.
I hope I have presented some ideas that may be helpful for each of us to rebuild or repair our self-image and enjoy each day.
Self-image is the mental picture, generally of a kind that is quite resistant to change, that depicts not only details that are potentially available to objective investigation by others (height, weight, hair color, etc.), but also items that have been learned by persons about themselves, either from personal experiences or by internalizing the judgments of others.
What is Self-image and How Do We Improve It?
From Psychology Today