THE BLOG

10 Lessons I've Learned Living With a Chronic Disease

01/14/2014 04:23 pm ET | Updated Mar 16, 2014
  • Dr. Soania-Mathur Family physician living with Parkinson's Disease, Founder of Designing A Cure Inc.

I was 27 years old, at the start of my medical career and expecting my first child, when the neurologist confirmed what the first clinician had suspected -- the tremor I had been experiencing over the preceding year was Young Onset Parkinson's Disease, a progressive neurodegenerative disease for which there is no cure. That was over 16 years ago, and I've learned a lot from this life experience as I face the daily challenges -- physical and emotional -- this disease presents. My story, however, is not unique. Each of us is challenged in some way, be it in our health, our finances, our occupations or our interpersonal relationships, and many of the same principles that I learned on my particular journey are hopefully relevant regardless of the challenge you are facing.

(1) Acceptance is paramount. I spent the better part of a decade following my diagnosis in fear and denial. And it took a toll on my physical and emotional wellbeing. It was only once I began to truly accept my diagnosis that I was able to move beyond it and begin to focus on not just living but learning to thrive despite my diagnosis.

(2) Acceptance doesn't equal complacency. You must be an active participant in your disease management, actively seeking solutions to problems that arise and take on a proactive approach to life in general. Being a passive bystander will not allow you to live successfully. It takes work be it physical commitment or emotional growth to overcome certain hurdles.

(3) You are not defined by your disease. We are much more than the label our disease or life challenge places on us. We are not defined by our circumstances, our disease, our relationship or our finances. We are parents, children, siblings, friends, mentors and so much more. From my perspective, this chronic illness is only part of my life and I won't allow it to consume my every thought or action or change who I fundamentally am.

(4) Perception determines your life experience. I may not have control over my diagnosis, but how I face this challenge is mine to determine. If I look only at the limitations this disease places on me then my quality of life will suffer. If instead I focus on my abilities and even the gifts this experience has given me, I am much more prepared to deal with the challenges I face. For example, I could focus on the fact that this disease has taken away a career I once loved or I could feel gratitude for the extra time I now have to spend with my children and patient education and advocacy.

(5) Take control of those variables are within your control. I may not have control over my diagnosis or my symptoms much of the time but I do have control over certain aspects that if optimized, can improve my life experience -- such as diet, exercise and minimizing stress. Be proactive when it comes to self-care.

(6) Don't take anything for granted. My life changed in an instant with those simple words: "You have Parkinson's disease." I went from being a healthy young doctor, wife and soon-to-be mother to someone with an uncertain future. All in an instant. Never again will I take the time I am able to be productive and engaged with family, friends and life for granted. Instead I treasure each and every moment as the gift it truly is.

(7) Adaptability is key. Each day is unique and to what degree my body will cooperate is unpredictable. I've had to learn not to be stuck on how things are supposed to be done. Certain tasks will require much more attention and time or may have to be modified in some way or even postponed to a time when my symptoms are not as impactful on my functioning. And sometimes circumstances will change the course of your life into an entirely new direction. Taking into consideration these new limitations when focusing on a goal, allows for a less frustrating experience.

(8) You have to let go of your fear of the future in order to begin living your present. Fear is paralyzing, an emotion that keeps you mired in your problems and prevents you from moving forward. Like Michael J. Fox has said: If you fear the worst and it happens, then you've lived it twice. If it doesn't happen, then you've worried for nothing.

(9) Always maintain hope for the future. Maintaining hope for the future as it relates to my disease (in terms of better treatments and a cure) and envisioning continued independence and productivity gives me the strength I need to face these life challenges. It allows me to power forward to what I hope is a brighter future.

(10) Everything happens for a reason. Find meaning in your challenge. I believe that there are life lessons in every circumstance joyous or otherwise. Whether it seems fair or not, obstacles present themselves for a reason and the experiences and introspection that these difficulties bring, allow us to evolve.