How Will People React to Your Diagnosis? 

Sharing bad news affects people differently. (Well, of course it does!) As the sharer of bad news about your health, you are probably devastated, embarrassed, frightened, and tentative. But can you be sure how the recipient will react? Will they feel a certain superiority over you now that you have been declared deficient in some way? Will things change between you? This uncertainty delays many newly diagnosed PWP (People with Parkinson’s) from sharing the burden.

Telling close family

Those who love you unreservedly will probably empathize. This feels like a bandage for your pain. They can’t bear that you are hurting. If a child has the bad news, it can be devastating for the parents, and vice versa. Posy longed to tell her father, as he had always made everything all right. However, it would not have been fair to burden him with extra anxiety at this point. He had struggled to maintain a positive outlook on life for the past 3 years since his beloved wife died, but now, at 95, he was declining.

Telling friends

Good friends are sympathetic, supportive and, in Posy’s case, infinitely kind and generous. Facebook friends offer cheer, virtual hugs, and encouragement. Passing acquaintances might express their surprise and sympathy, but, as their lives will not ultimately be affected, they usually (as would be hoped) move on quickly.

Telling the in-laws

While they are (acquired) family, the in-laws are naturally going to have their own off-spring’s well-being as the priority. Posy worried that her husband's (lovely) parents might resent Posy for her shortcomings and now perceive her as a poor choice of wife, even a burden. However, as she was revealing her diagnosis to her own family members, it would not be fair to prevent her husband from sharing his worries with his own family.

Telling "the one"

But, what about the person to whom the responsibility of care will fall? Posy had married her lovely, younger, husband in 2013, after 15 years of pursuit! (No worries! He won’t be reading this!) Posy was still “a catch,” according to various other men at the wedding.

She was lively, loving, and quite youthful in her looks and outlook. When Posy acquiesced, they had a perfect English country wedding. Posy’s husband was finally marrying the “girl of his dreams,” and Posy was brimming with joy and love for him. Wow! This was the quintessential fairy tale.

No one foresaw a problem. Posy’s family could boast a longevity that her husband’s family could not. Posy was quite prepared that one day, she might be her husband’s carer! But the evil fairy had obviously sneaked into the wedding and placed a curse on them.

Caring for Parkinson's

In early 2017, while still caring for her own father, Posy had to tell her husband that she had Parkinson’s. Since that traumatic moment, he has done all the food shopping and preparation, all the gardening and driving, etc. Posy has grown tired of her own voice as she details yet another appointment or health issue. Her husband has shouldered all these extra burdens without hesitation.

He took early retirement (at 50) as no one could predict how long they would have together before Posy declined. Posy was advised to “get on with her bucket list.”

Together, they have braced financial tightening and the consequent restriction on luxuries and leisure activities. Luckily, they had just moved into the idyllic cottage of their dreams in a picturesque, friendly English village. The only traveling on Posy’s "list" is to see her daughter in Florida, and, if possible, revisit Italy. Her husband likes to take the dog everywhere, so driving through the UK and Europe will do for him.

What if the table turns?

What if, (Heaven forbid!), the carer becomes the patient? All too often, carers become exhausted and succumb to their own illnesses. Remember the fear and devastation you felt? However much of a difficulty it will be to care for them (in any conceivable way,) it is worse for them. Remember the kindness, love, and willingness to help that was given to you.

When you find out, please try to react with love.