Coming out of the Parkinson's Closet

How long did you stay in that closet? How long is it, Posy wonders, before most newly diagnosed PWP (People with Parkinson’s) decide to share their unhappy news?

The bad and the slightly good side of a Parkinson's diagnosis

For Posy, the years leading up to her definitive Parkinson’s diagnosis were often excruciating, as she was terrified of appearing incompetent in her career. The time off required to attend a host of medical appointments were certainly a nuisance to her employer and to her colleagues. Posy had MRIs, X Rays, and injections into her spine to cope with sciatica. Her carpal tunnel symptoms were making playing the piano difficult, hence impeding her work as Director of Music in a successful school.

The operations led to the start of Dupytren’s Contracture. This had to be treated with radiation therapy. And on, and on. Posy worried she might be perceived as weak and incompetent for having these problems. Of course, she always worked 10 times harder to produce the best results.

Validation at last

On hearing her diagnosis, and unaware of how Parkinson’s would impact her life, (imagining it to be a condition which mostly just induced tremors), she felt validated for all those hours away from work, and was comforted by hearing the consultant say, “You may not experience obvious symptoms for ten years.” Posy was stupidly relieved to be given a positive diagnosis at last! Now she could get on with fighting a recognizable enemy! BUT NO-ONE MUST FIND OUT!!

Who to tell?

Well, for a start, it would be career suicide to tell her employers or the parents of the children she taught. The first of these had already recently asked her if her health was such that she was not “up to fulfilling her duties.” This was a key role, a prestigious post. They seemed exasperated with her absences and minor injuries (often caused by weakness and falls).

The parents of Posy’s pupils seemed to hold her in high esteem for the high achievement and confidence she inspired in their offspring, recognizing her enormous effort and dedication. Posy wanted to hold on to that image! Her friends would obviously support her, but again, Posy did not want to be perceived as a victim. Posy did not want to show weakness!

Diary of coming out

Day 1

Posy told her husband. He was so upset, Posy immediately realized this was more serious than she had thought. She had always promised her daughter that she would never hide anything from her, so Posy explained once again to her. Her reaction was sympathy and empathy, as she, too, was unwell.

Day 2

Posy was close to her sister as they were both caring for their beloved father. Her sister was shocked, but, with her medical knowledge, she was encouraging. She begged Posy not to tell their father. He was so anxious anyway, it would “finish him off.”

Day 7

Thinking it was too difficult not to tell her family, and then deciding it would not be fair to make her husband keep a secret from his parents, all were duly informed a week in. Everyone was asked not to spread the word. All were kind and supportive.

Month 6

Sadly, (what an understatement!) Posy’s incredible dad passed away. Personal identity and image almost ceased to exist now. Who cared if people knew about Posy’s condition? Her wonderful parents were gone. Who was Posy now, anyway?

From then on, each time Posy told a close friend, they were shocked; most cried. Funnily enough, this did not feel like the pity she had dreaded. This just felt like love.

Opening the door for others

Posy noticed at a church service that a quiet man’s hand was shaking, and his voice was unnaturally quiet. Posy decided to go for it… “Hi, have you got Parkinson’s, too?” Suddenly other people were opening up. An amazing three, out of the small group of eight people, who were leading the service confessed to having Parkinson’s! Ha, ha! This was an almost funny coincidence! Until that moment, each of the three probably felt alone and ashamed of their secret. Now, they could bond with others in the community.

Posy has found that it is therapeutic for her to announce her condition to people. It seems to reassure people, if they have it too, when someone as (seemingly) confident and enthusiastic about life as Posy can announce it freely and be (fairly) positive about it.

At the village fête, Posy offered to help a couple of ladies who were from the next village to access the refreshments. Then she offered an arm to the lady with a stick (as her friend would be carrying the purchases). Miscommunication ensued, the friend started passing mugs of hot tea to Posy. “Oh, no, sorry,” laughed Posy, “I am ok with walking, but you won’t want me to carry your drinks! I have Parkinson’s!” They all laughed. As always, they remarked they couldn’t believe Posy had Parkinson’s. Posy’s ego was boosted, she had fun and she had the gratification of cheering others.

Posy recommends coming clean. Apart from delicate situations with employment, it has definitely been less stressful, more rewarding and altruistic to have come out of the stifling, debilitatingly lonely Parkinson’s closet!