“In the 15 years I have been a therapeutic massage therapist, you are my first client who has not complained about your health issues but rather shared them with me.” Since this insightful statement was said to me, it has entered my train of thought numerous times. I love how someone that I met for the first time and spent two hours with can discover and share such a vital part of who I am. There is much validity in her observation, as I do not complain about the things that encompass my life, but rather share them.
Sharing has become a therapeutic source of healing for me. However, there are times when sharing can stir up other emotions and situations. When living with a chronic illness that does not always present itself visually, we may face a circumstance of others not fully understanding or believing the severity of our condition and pain. Our family or friends could be going through denial. They may refuse to believe what we are enduring, whether it be lack of compassion or their mechanism of dealing with the situation or what their future may hold for them.
There are many facets to living with PKD, as not just the person diagnosed is solely affected. Those around the patient, from family with and without PKD to friends and peers, experience different effects of the disease and emotions. We all handle stress and life in our own unique manner. Others can’t be faulted for how they act and feel. I have lost connections with friends and loved ones during my PKD struggles. I contribute this to lack of knowledge, confusion of emotions and denial. However, as the years pass, I continue to be blessed with an abundance of friends, love and support that encourage me along my PKD journey. I wish I could provide a manual on how to cope with the emotions of PKD for those with the disease and their circle of family and friends. My best teacher has been time.
I hope for all of us to be blessed with family and friends that provide great comfort and support, as everyone deserves this. Although we may be exposed to others who, as they say, “ignorance is bliss.” The ones that may have fear in acknowledging the disease and might hide behind their denial, which could be of their own diagnosis or facing their emotions of watching a loved one live through a chronic disease. We can’t blame those that live in their own world. Or the people that feel like denial is easier than fear. We can’t fret over those that never ask how we are doing. The best things we can do are shake it off and not have anger build up inside us and don’t fault those that just don’t “get it.”
We have a lot on our plate, a lot to worry about, and most importantly, a lot of living to do! Any stress factor we can eliminate is healthy for us. To those who are struggling with others understanding and showing compassion for what you are going through, please know that I understand, believe in you and am cheering you on. For those facing denial, I hope this encourages you to try and put yourself in the shoes of those battling a health issue; know that your support would mean so much and that we are here to support you. So let’s join together and shake it off, keep our positive supporters closest to us, share—don’t complain, be true to ourselves, and stand proud.
Have you experienced any scenarios like these? If so, please share your thoughts and any advice you have.
Thank you for sharing. I needed to read this. I watched my father change as he went through end stage renal failure, as he prepped for dialysis, and thenater prepared him for his kidney transplant..as he changed from being my strong, nothing can beat him dad into a more sensitive, a bit scared and much more fragile man.. I was mad at the world for what he was going through and was angry knowing that is what I was going to go through since we both have PKD.. Many people just said “by the time it affects you, they will find a cure”.. One can pray.. For some reason hearing that made me upset because I was upset that it felt as if they were blowing it off. It’s not easy for others to understand or accept what PKD means and what the affects are. One thing I have learned is that although this is out of our control.. How we handle it is what we can control.. I have my days, my moments where it gets me down.. But them I realize I would prefer to live my healthy happy days being just that. Life is too short and I honestly want to live a happy life.. So the “shake it off” is exactly the right approach!! So thank you for sharing..
Makes me happy to know that you “needed to read this.” I am sorry to learn that you had to watch this disease change some characteristics of your father. I can’t imagine the strength needed to endure that. Your emotions towards watching your father, thinking of the future and others comments are completely understandable. Your resilience and how you remain so positive is commendable and will help you lead the happy life that you desire. I hope your father and your health is well. Take care and keep “shaking it off.” 🙂