The reality of life with a chronic health condition – a message for those who don’t understand
Have you ever been judged by others for the things you do or the way you live your life? I know this is a rhetorical question because we have all been judged, and we probably judge others as well. Sadly, this is part of human nature. However, with this knowing, we can be much more mindful of how we treat others and hope that they will do the same.
The reason I am talking about this is because some people, probably many people, who have a chronic health condition and have had to modify their life because of their unique health circumstances, like me, are often judged by others rather harshly, and it needs to stop.
I want to share with you some things we may hear and then some things that you can share with the people in your life so that they better understand, or at least be more understanding of why you live your life the way you do. Personally, I don’t mind if people don’t understand the pain that I live with because I know it isn’t possible for someone to feel exactly what someone else does. What is most important to me is that people are understanding that my life is different from before and I may be limited in certain ways. This gift of acceptance from others takes a ton of pressure off me. It lets me just be myself and not feel the burden of having to explain myself over and over.
For some brief background, I developed chronic pain from dystonia in 2001 and it turned my world upside down. I could barely function for years. I had to give up everything I was doing and move in with my parents for help. A tough pill to swallow at the age of 30 with my life all planned out in front of me. I lost what seemed like everything. I have since improved a lot, but I still deal with some rough symptoms. Every day I work hard to get better and better, but in those early years I wanted to give up. The pain was too intense for words and to add insult to injury, I dealt with some harsh comments from people. Perhaps better words are indifference and dismissive. Some of them included:
“You’ll just have to tough it out.”
“It’s all in your head.”
“You’re just having a bad day.”
“Everybody gets tired.”
“If you would just get out more.”
“It can’t be that bad.”
“There are people worse off than you.”
“If you would just exercise more.”
And one of my personal favorites…”You STILL have that??”
While I value the opinions of people in my life, these totally miss the mark when it comes to a chronic health condition. For my own sanity, I have had to learn to be independent of the opinion of others and live my life the best way I know how so I am most comfortable, regardless of what others think.
Someone’s opinion of us does not have to become our reality. Finding relief should be our number one priority, or at least at the very top of our list; not pleasing others. Hopefully, family, friends, and co-workers will respect us for this. For those who don’t, perhaps the following list will help them better understand your reality… and this is the short list! Let them know that these are things that may happen because of your health situation:
– We may not reply to messages right away or answer the phone.
– Some days we can do certain things and not again the next day. Every day is a mystery to us. Some days, it is hour to hour not knowing how we will feel, which can cause anxiety and depression. The persistent, nagging feeling of not knowing from moment to moment how we will feel and what we can do is agonizing for us.
– It might take a while for us to recover from what seems to others as the most mundane or easiest of daily tasks. On a personal note, this is my reality every day. Generally speaking, for pretty much every hour of work, especially physical, I need a minimum of 1-4 hours recovery time. Some days, just a tiny bit is all I can do for that day. Other days I can do a lot more. I NEVER know.
– We might cancel plans, maybe even at the last minute.
– We might leave a party or other social gathering if our symptoms kick in.
– Sometimes we might suddenly need to lie down and rest, and even maybe need to use ice, heat, a massage machine, trigger point tool, or something similar.
– Our level of energy changes in a moment’s notice and we can be exhausted. In addition, many of us also have a racing mind so it is hard to rest when we need it most.
I know this list is brief, but I think it sums things up pretty well for a lot of us. We have to be honest with others and also respect that what we go through is not always easy for them either. It is also very important to ask them to never give up on you and please don’t stop asking you to do things. We often feel alone too much as it is. Just being asked means the world to us, and when we feel able, we will always jump at the chance. We crave doing anything “normal,” a word that has taken on a whole new meaning in our lives.
When you are faced with people who are tough to be around that do not try to understand, it might be helpful to follow the advice of Marc and Angel Chernoff who have a blog called, Marc and Angel Hack Life.
– Breathe deeply, and often.
– Remind yourself that we can’t control other people.
– Do not take other’s behavior personally. Choose to see the good in them.
– Let go of the ideals and expectations you have about others that causes unnecessary frustration, arguments, and bouts of anger.
– Remember that when others are being difficult, they are often going through a difficult time we may know nothing about, so give them empathy, love, and space.
– There is one I would like to add to Marc and Angel’s list which is, “always live in a place of gratitude and forgiveness.” This sets us free from the pain we allow others to inflict upon us. The key word is “allow” because no one can make us feel a certain way unless we let them. People will be how they will be and there is little we can do about that, except how we react to their behavior which only hurts us.
We need to put ourselves in a position of power and not accept labels that may be put upon us such as lazy, mental, apathetic, sympathy seeking, hypochondriac, or any other thoughtless title sometimes associated with the life we are forced to live when we have a chronic health condition. We need to be careful not to label or judge ourselves either. Honor yourself for the efforts you make every day to live the highest quality life possible.
Lastly, pace yourself and ask others for their patience. Most important, be patient with yourself. Take responsibility for your condition in order to make the best decisions. This is your life. Own it and live it how you choose, independent of what others think.
As William Shakespeare wrote:
“To thine own self be true…”
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.