By Soania Mathur
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?”…
February 9, 2012
Dr. Soania Mathur is a family physician who retired from practice due to Parkinson’s disease. She is a speaker at patient-directed conferences for the Parkinson’s Society of Canada and is a resource for education projects. She serves on the Patient Council of The Michael J. Fox foundation for Parkinson’s Research and is an advisor to The Brian Grant Foundation.
More from Soania Mathur.
In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union? That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, Read More…
By Soania Mathur 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 Read More…
By Soania Mathur Time to tell the kids… As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” Read More…
By Soania Mathur Well here I am, 3:40 AM, up and out of the warmth of my bed – yet again. It’s been years of sleep issues of every sort. Sometimes it’s initial insomnia where I’ve spent countless hours staring into the darkness, reading into every shadow, tossing and turning, trying to find a comfortable position, trying not to wake my husband, trying not to look at the clock which seems to mock my difficulty. Other nights I do fall asleep, either because I haven’t truly slept in literally days or because I’ve given in and actually taken yet another Read More…
Soania Mathur's early-onset Parkinson's diagnosis has allowed her to live more in the moment in her role as a mother, wife, and physician. Soania explores how Parkinson's has affected her children and how disclosure is crucial for someone diagnosed with Parkinson's. January 17, 2012 Dr. Soania Mathur is a family physician who retired from practice due to Parkinson’s disease. She is a speaker at patient-directed conferences for the Parkinson’s Society of Canada and is a resource for education projects. She serves on the Patient Council of The Michael J. Fox foundation for Parkinson’s Research and is an advisor to The Read More…