Dealing with Chronic Illness Is More than Medical Treatment

We all use numbers to some extent from our early youth through old age. We are often bombarded with numbers. They’re used to convey information that we have to decide is pertinent or not in our lives. We all use numbers to some extent as we live our daily lives and as we plan for the future. Some numbers like birth date and Social Security numbers are used over and over. Other numbers, like our bank balances, are always changing. Other numbers are just usable for a short period of time or may be just interesting or might cause you to take certain actions. Other numbers are used in predicting medical outcomes. For instance, life expectancy the year I was born was 62.6 years.¹ What if I had lived my life as if that number was real? I am now 82 years old. I would have run out of money, probably made poor health choices, and not planned for living beyond 2004. Is it a surprise that in 2024 more than half (56.7%) of the people born in my birth year are still alive?²

Life expectancy is almost always changing

I have survived a pandemic like Covid. Friends did not. I have lived through the Great Recession. Friends will never recover financially. If numbers like life expectancy from my past weren’t accurate or were applicable only to a large population and not to me specifically, what should I do about some current numbers running around in my brain? The National Institute of Health says my life expectancy at age 80 is 7 years.³ Throw in my Parkinson’s, most people with Parkinson’s disease have the same, or similar, life expectancy as those without the disease. Throw in my Chronic Kidney Disease and the fact I am on dialysis and my life expectancy drops very little or becomes more variable to 5-10 years.⁴

The problem with using numbers based on a bell curve

Now, all these numbers seem to say, on average, 6-8 more years for me. But, there’s a problem with all these numbers! All shown are based on the bell curve and in very large populations. I’m just one data point out of a multi million. So, predicting life expectancy based out of those large populations for a specific individual is not possible. All you can say is someone is likely to die today, half will reach the 6-8 years and some few will live possibly to more than 100. Where am I on that curve? It’s impossible to tell for one person, but there are some tells. Some are from my past but more are still to be revealed. Despite my chronic illnesses, I have lived twenty years longer than predicted at birth. Lucky? Perhaps! But, for many of us, past trajectories tend to continue. Do I feel that twenty years is largely due to a combination of my life circumstances? Yes, part of beating the averages is due to genetics, the environments and locations I have lived in, educational opportunities, access to medical treatment, and when in life I acquired my chronic illnesses and immediate family support. I also have several, potentially fatal, no known cure, progressive illnesses I have been coping with for the same twenty years.

Fighting my illnesses

I decided early on that I was going to do everything I possibly could to fight these illnesses. My first step was to research and engage the best medical specialists I could find and be the most knowledgeable compliant patient I could be. My research found good mental health and positivity had to be a part of my ongoing treatment. Because my negative thoughts can sometimes be overwhelming, I have sought professional mental help to develop coping skills and ways of avoiding negative thoughts and in minimizing persistent nightmares. In trying to stay positive, I have found a few super weapons: optimism, resilience, asking for help, accepting help when offered, and the power of expressing gratitude. Optimism is associated with exceptional longevity in two epidemiologic cohorts of men and women.⁵

How to have a positive attitude with Parkinson's?

The Mayo Clinic has some suggestions: one can be optimistic or increase optimism by engaging in more positive thinking. What do you usually think negatively about? Is it illness, work, money, your daily commute, life or a relationship? Start small by focusing on one area to approach in a more positive manner. Manage your stress by thinking positively instead of negatively. Review what you're thinking periodically during the day. If your thoughts are mainly negative, try to find a way to put a positive spin on them. Think of small thoughts you can change. Incremental change is easier to achieve than big change. What is the little change that is achievable? Write down three things you are going to do to change your negative thoughts to positive. Find something to laugh or smile at every day. It can be as simple as looking at pictures or jokes. Laughter, as the saying goes, is the best medicine. Give yourself permission to smile or laugh throughout the day. When you learn to laugh at life, you will feel less anxious, distressed, anxious, apathetic, and depressed.⁶

Be appreciative of your life

Think of five things you can be thankful for. For instance, let others know that you are thankful for their being in your life. Improved sleep, improved immunity, feeling better about your situation, and better moods are all positive results of expressing gratitude. Try to exercise every day, 30-60 minutes will do. Want to reduce stress and be in a better mood? Exercise is shown to positively affect mood and reduce stress. You’ll sleep better. Learn new techniques and coping skills to manage stress. Whether it’s meditation, yoga, deep breathing, or expressing thanks, you can be a more optimistic person. Resilience is my second weapon. Resilience is the ability to adapt well to challenging life experiences, such as trauma, adversity, or significant stress. It involves being flexible and adaptable. One can develop or increase resiliency. Surround yourself with people you can depend on to give helpful advice and feedback. Negative people can only drag you down.

Practice positive self-talk

Start by following one simple rule: don't say anything to yourself that you wouldn't say to someone else. Be gentle and encouraging with yourself. If a negative thought enters your mind, evaluate it rationally and respond with affirmations of what is good about you. Think about things you're thankful for in your life. Accepting help will only make your life easier. Expressing gratitude to others for help or just being there for you makes you feel good. It’s easy to do. Give it a try.

By implementing these suggestions you will find yourself being more optimistic and resilient. Both are part of overall positivity and an important part of dealing with illness. Those pesky numbers? Evaluate the numbers that surround you in terms of why and more importantly if they are meaningful to you. Are they really important to the decisions you make on life or medical matters?