Something Sweet with Susan

“Promise me you won’t tell anyone.” These were my first words after telling my husband my symptoms presented as Parkinson’s. The feeling of not wanting anyone to know is not uncommon.  As a matter of fact, it is documented that over 50% of people diagnosed with PD hide it, not just in the beginning, but many hide it for several years or even decades.  

What causes the feeling of wanting to live in the “Parkinson’s closet”?  Some people hide because they feel the symptoms are not socially accepted and they don’t want to feel awkward or embarrassed around others.  Others do not want to be defined by it and do not want pity. For some, it’s concern for their job and/or health insurance. I’ve experienced this feeling and cannot explain not wanting anyone to know.

I hid my Parkinson’s diagnosis for almost six months.  Even before my neurologist confirmed my diagnosis, I hid my symptoms from everyone.  I didn’t tell my husband that I was having tremors for about three months, and only told him then because he asked why my hand was shaking.  How anyone can unconsciously hide symptoms is so strange to me.   It was during lunch with a new friend that I became aware I was hiding my tremor. This man has lived with PD for over 20 years.  Shortly after being seated at the table, during conversation he stopped and said, “It’s your left hand, isn’t it?”   I momentarily froze, then said, “How did you know?”  He proceeded to tell me, “Because you’re hiding it.  You keep it under the table.  It’s something we all do without thinking.”  

This realization did not make me want to change my feelings of continuing to hide.  It was three months later before I knew I could not keep this to myself.  I remember saying to Greg, “It’s time to tell.”  He did not agree.  He didn’t think I needed to tell anyone because my symptoms were so well controlled by my medication. 

I know that everyone does not have the same walk with God, nor do they share my faith.  I don’t mind saying that I felt very strongly that God wanted me to share my health journey with others.  I felt God was telling me I could not help anyone else if I continued to keep this to myself.  I knew after surviving the “widowmaker,”  that God had a plan for me and there was something I was supposed to do.  I prayed for a year that I would know what His plan was for me.  There is no way to count how many times I prayed “God, I can’t write.”  I fought these feelings for two months before I said, “Ok, God I get it.  I’ll write but you have to open the doors because I don’t know where to start.” – Conversations like this are often how my prayers sound. I did not know the first thing about setting up a website.  One of my friends, a professional photographer,  heard what I was planning to do and told me she wanted to do all my branding photos.  She wanted to be part of God’s plan.  Another friend, a retired high school English teacher, said she would do all my editing.  This was not accidental, it was all part of God’s plan.  

When I decided I no longer wanted to hide the fact that I have PD, I knew I wanted my friends to hear it from me.  The last thing I wanted was anyone saying to someone else, “Did you hear Susan Haag has Parkinson’s?”   Determination has defined me all my life.  PD may some day steal my mobility, but I’m determined to not let it steal my spirit and love of life. I wanted my friends to see that in me.  After opening up about my diagnosis, the support I received was incredible.  Most of all, it was freeing.  I am very glad that I made the decision to share my story with others.  Living in secrecy is no fun.  It creates a great deal of stress. Not only is it stressful to maintain; experts fear it may be slowing down research needed to find new treatments.

Knowing what I know now, I’m not sure if I would change the first week of diagnosis or not.  I made the decision to start medication right away.  That decision eliminated me from participating in studies that could help with Parkinson’s research.  Most of the research studies disqualify patients if they are already on PD medication. I can’t look back and change my decision, but I can make others aware. 

It was not easy for me to find information about PD on the internet that I felt I could trust. I rely on michaeljfox.org as my main PD educational source.  There is a big need for participation in the Parkinson’s Progression Markers Initiative known as PPMI.  Anyone over the age of 18 in the US, with and without Parkinson’s, can join PPMI through its online platform.  

If you are interested in learning about this program click here to read “The Study That Could Change Everything.”

If you are willing to participate in the research program click here.

There is nothing wrong with living in the Parkinson’s closet.  If you keep it a secret, tell a few or tell the world, that is a private decision and there is no right or wrong answer.  Everyone with PD has to do what is right for themself.  I had to get past the shock and move on to acceptance before I was comfortable opening up to others.  Not once have I regretted my decision. Whatever you decide, remember your diagnosis does not define you.

“Trust in the Lord with all your heart; and lean not on your own understanding.  In all your ways acknowledge him, and he shall direct your paths.”
Proverbs 3:5-6