Inspiring you to live well with Parkinson's disease
Once again it was a restless night but worth it this time. I got home around 1:30 in the morning wired on a combination of caffeine and Sinemet. The insomnia that ensued was inevitable but I had such a great night eating, chatting, laughing and playing cards with my girlfriends that I have no regrets. It was our monthly girls’ poker group, one of many get togethers that I look forward to on a regular basis. Be it lunching out, dinner at a friend’s place, movie night or simply going out for a coffee, having that social connection is invaluable to me. With three kids and a million duties to fulfill, it’s not easy to find those opportunities but it is something I try and make time for.
Let’s be honest, we are all social beings, granted some of us more than others, and our social network can provide us with the distraction that we sometimes need to escape from our daily stress. It’s nice to lose yourself in the sometimes mindless chatter and not have to think about some new symptom that has cropped up, how screwed up your meds seem or worry about what the future holds. It’s simply therapeutic to sit with friends that are not part of my PD world and that have other concerns or issues to discuss. (My PD friends, those amazing individuals that are so important to me I will discuss in a future post.)
I must admit however that interaction with my friends is now far more authentic and enjoyable than it was in the past. This is because in the beginning, actually for well over a decade, I chose to not disclose my diagnosis to anyone, except for a very select few. (Yes, a decade!) Some of it was my own denial, some of it fear of what people would think but it was mainly because I dreaded the potential pity party that I felt would be held in my honor. "Poor you!" was the last thing I wanted to hear.
This fear of being pitied is a common theme when speaking about disclosure issues to others who are affected by chronic illness. Another is being thought of as “damaged goods” or somehow less capable than they were prior to their announcement. Still others fear that they will be labeled as “sick” and treated differently or even left out of social engagements and activities altogether due to others’ misconceptions and what they perceive as weakness. We all struggle enough with our own self-image and sometimes this doubt is amplified in how we feel our social circle views us.
I struggled with all of this which caused me much angst but this path of deception that I had chosen became even more difficult. Developing new real friendships or expanding existing ones when you’re hiding such an integral part of yourself, was next to impossible. The secret I chose to keep had built a defensive wall around me, making it difficult for both family and friends to get close. They all sensed there was something going on but felt helpless because I never mentioned the challenges that were beginning to overwhelm me.
Not only was it difficult emotionally but also logistically. Because I had decided to keep my condition private, a simple invitation to a social event meant not only did I have to plan what I was going to wear but also had to carefully work out the timing of my medications. Not to mention that once I was there, the energy it took to position my body to minimize any tremor while doing something as simple as holding a cocktail or using a knife and fork, was exhausting. I did have some back up. My sister-in-laws and husband developed a system whereby they would cover for me or distract my friends if they saw me in trouble. Yet despite their help, by the end of the evening the physical and emotional fatigue was overwhelming and most times, it didn’t seem worth it.
I felt myself withdrawing, starting to isolate myself, finding excuses not to attend events because the time I would have to spend fixating on hiding my symptoms far outweighed any pleasure I would feel being there. Eventually I became tired of the person I was becoming. I didn’t like the fact that I rarely laughed anymore. The secret was starting to become too massive to keep and it was taking its toll on me emotionally and physically. And so despite my hesitation, I began to tell my friends. There were tears and hugs but most of all there was unconditional support and the “pity party” that I feared, actually never took place.
Did everyone react the way I had hoped? No, of course not. There were a few that seemed more devastated than I had ever been and every interaction with them became an interrogation into my psyche. Still others clearly were too overwhelmed by it all and therefore chose simply not to acknowledge the situation and talk about everything else they could possibly think of. For these small groups of people, my disclosure has been a learning experience for them as well and most have come around as the initial shock has worn off. And those who haven’t, make me smile - there’s really no need to get frustrated, they are who they are. But thankfully the vast majority have been heartwarmingly supportive, not making Parkinson’s the center of our interaction but stepping up when necessary.
My advice to anyone living with this “secret”, is to consider not waiting as long as I did before you share your diagnosis with others. The timing may feel right when you’ve come to some personal level of acceptance about your situation or you may want to reach out sooner in order to get some extra support while you get your head around the diagnosis. That’s a very personal decision.
Regardless of when you decide to confide in those you cherish, you will be surprised at how much lighter you will feel. In my case I can easily say that it made a world of difference once I “came out” with my condition, almost 10 years into this journey. I felt such a burden lifted from my shoulders, one that I really wasn’t even aware existed, until it was gone.
I feel as though I am now living authentically, being true to myself - all parts of me. And now when one of my friends inadvertently ask me “What’s shakin’?” (someone inevitably does), I can laugh at their embarrassed expression, give them a hug and ask in return “Besides me?”...