Serene Forest

Wednesday, February 19, 2020

Self-image With Undiagnosed Illness? How To Rebuild Image When You Can't Do Anything?

Self image with undiagnosed illness? 

How to rebuild image when you can't do anything?

Last week I asked the members of our Periodic Paralysis Network Support Group to name a few ideas that they would like to have me write some new blog articles about, related to Periodic Paralysis (PP). One member asked me to write about ‘self-image with undiagnosed illness' and ‘how to rebuild self-image when one cannot do anything?’ I needed to think about this for a while, because I myself have struggled with these issues, especially as my own condition continues to decline. I also continue to struggle, even now, with my own self-image nearly a decade after receiving my diagnosis for Andersen-Tawil Syndrome (ATS). The timing on this was more than coincidental, however, because I just finished reading a book that was given to me as a gift that holds some answers to these questions and I will discuss it in this article. I have done some research on this as well and hope the ideas I have come up with may be helpful to my fellow Periodic Paralysis sufferers and myself.

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!

While I was researching this subject I found a really simple but informative article written in Psychology Today by Katie Willard Virant MSW, JD, LCSW published on August 10, 2018. It is entitled Self-compassion in Chronic Illness: A Dose of kindness for improved health. The author discusses three important components that make up ‘self-compassion,' which can be used to help us rebuild a positive self-view of ourselves.

They are: self-kindness, common humanity and mindfulness.

The three components of self-compassion:

When we are chronically ill, we tend to be negative and use self-blame and self-criticism often. We did not make ourselves sick nor is it our fault that we cannot do things that others can or that others think we should be able to do. We may even think of ourselves as ‘stupid’ or lazy at times. Instead we need to change the self-dialog and treat ourselves with acceptance and understanding. It will not come easily, but with practice we can begin to feel better about ourselves.

Common Humanity
We need to remember that we are not alone in our suffering. Others are going through the same things we are experiencing. Others also have Periodic Paralysis. Our journeys are much the same. Painful experiences are a part of everyone’s lives.

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.

You can read more details in the article below.

From Psychology Today
Self-compassion in Chronic Illness

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.

As I mentioned in the opening paragraph I received a truly remarkable book for Christmas and just finished reading it last night as I was contemplating writing this article. I want to mention it here because I think it may be helpful in rebuilding ones self-image. It is Man’s Search For Meaning written by Viktor E, Frankl, a Holocaust survivor and the creator of Lgotherapy.  It has helped me tremendously in how I look at my life with chronic illness, which has caused me great loss. It is one man’s story about how he found meaning in every moment of his life despite losing everything including every member of his family and suffering in unimaginable and heartbreaking ways. It was inspiring and filled with ideas of how to change our way of thinking about, and looking at, our life. One of his important quotes in the book is “suffering is not necessary to find meaning, only that meaning is possible in spite of suffering.”

Another thing we must have in order to re-build and maintain our own self-image is to awaken each day with HOPE. That can be very understandably difficult for us.

What is hope? According to Longman Dictionary of Contemporary English hope is “a feeling of wanting something to happen or be true and believing that it is possible or likely.” Another dictionary states hope is a "feel[ing] that something desired may happen". Hope is a sense or desire that things will turn out for the best. The word hope may be used as a noun or a verb. 2

In terms of my life with Periodic Paralysis, many doctors, including the specialists, have told me that there is nothing they can do for me. I can take no medications, have no surgeries and I am in a gradually declining physical state. I would be dead now if it were not for my husband, Calvin’s research and fight for the things that now keep me alive and were giving me a better quality of life. He found that preparing and feeding me a pH balanced diet with needed supplements, providing me with oxygen therapy, helping me to discover and avoid my triggers, sheltering me from stress, keeping me hydrated, monitoring my vitals and remaining optimistic brought me back from the brink of death and reduced my paralytic episodes from four or five full body attacks a day lasting several hours at a time to one or two less severe episodes a year!

He had hope. He had a desire that things would turn out for the best. He was correct in what he did and how he did it and was optimistic that I would get better. He maintained hope that I would improve in all ways and the truth is that I did. Since that time, because of his hope and optimism, which I now share, we wrote and published, four books about Periodic Paralysis and maintain our PPNI Forum and our Blog. We share all that we have learned to help others with PP.

I post something about HOPE each day in the Support Group as a reminder to each of us. Please do not give up HOPE.

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.

Until later…


Oxford Dictionary
the idea one has of one's abilities, appearance, and personality.
"sickness is an affront to one's self-image and dignity"

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.
Self-image may consist of four types:
1.    Self-image resulting from how an individual sees oneself.
2.    Self-image resulting from how others see the individual.
3.    Self-image resulting from how the individual perceives others see them.
4.    Self-image resulting from how the individual perceives the individual sees oneself.
These four types may or may not be an accurate representation of the person. All, some, or none of them may be true.

What is Self-image and How Do We Improve It?
Self-compassion in Chronic Illness

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