“More than 80 percent of those with chronic, invisible illnesses downplay their true feelings to make others feel more at ease.” *
This statistic really hits home. Can you relate to this, too?
For those of us without a “PKD belly,” our disease is quite invisible. Living with epilepsy, a kidney transplant and chronic pain for me is mostly invisible, too. We personally endure our illnesses daily, both physically and mentally. Sometimes it feels easier not to talk about it or to not be honest with others and ourselves on how we are really doing.
A common question when crossing paths with someone is, “How are you doing?” An easy answer is “I’m fine” or “I’m good,” and to change the focus of the conversation to something else. Who really wants to hear about the pain I’m in and that taking a shower and getting ready for the day is a big task and accomplishment? Plus, sometimes it is hard to talk–and face the truth–about how we are really doing. However, it is a different scenario when at the doctor’s office.
I recently had an initial consultation with a physical therapist. In our first appointment together, I tried to share as much of my health history with her as possible in one hour. As impossible as this is for me, it is equally exhausting to relive and be reminded of all that has been dealt to me in my life, and most importantly go into depth about how hard the past four years have been with my extensive back issues and chronic pain. Saying all of this out loud to a person I just met reminded me of what a different life I have now than several years ago and the reality of how much of what I go through is so dreadful. Tears began to well up in my eyes and stream down my cheeks as I looked at my physical therapist with the hope that she can help alleviate my daily pain as I strive to obtain a better quality of life.
Why is it easier to tell a perfect stranger what I deal with on a daily basis and be honest about my emotions with her? First, because I needed to for the betterment of my health. And second, because I did not feel the need to protect her. For example, there are times when my husband and parents ask how I am doing and I don’t fully divulge the truth out of an automatic instinct to protect them. I don’t want to see the look of worry on their faces or hear it in their voices. What I endure is bad enough as it is, and it’s hard to see that have a ripple effect on the people I love. There are also times where I want to get out and do things and if I share that I’m in a lot of pain, I don’t want it to hold us back or change others’ plans. Then there are the days when I just want to feel like my old self rather than a full-time patient; days when I don’t want to talk about health issues, the pain or the way it has changed not only my life but also my husband’s. There are days I wish I could work full-time and then hop on the trails in the evening and do a six-mile hike. Sometimes I feel like my life is in slow motion – like I’m walking in quicksand trying to catch up to everyone else following their dreams.
While sometimes we want to escape from our real emotions and fears, they are so important to express and face. As patients, we have a lot on our plates and plenty that can overwhelm us. We need people in our lives that we can talk to when we are not fine. My husband, Noah, is that person for me. Feeling stressed, exhausted or worried doesn’t mean we are any less than anyone else. We are all strong and courageous in fighting the good fight every day. Being true to ourselves and others is empowering and enables us to feel that we are in control of our lives. Please know it is ok to not be fine, and that the sooner we are honest with ourselves and others, the sooner we will find the support we need within ourselves and those who care about and love us.
Who is your go-to person that you don’t have to say “I’m fine” to? How does their support help you?
*According to Molly’s Fund Fighting Lupus