“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
How true it is! Great post Valen!
Thank you Cathy! Hope you’re doing well! xo
Thank you, Valen, for explaining how I feel so well. It’s so much easier to say that I’m fine than to tell how I really feel. I’m fortunate to have friends who have watched me go through a lot of health issues over the past 13 years so I can tell them some things. My husband, Frank, is the one I tell. I can’t hide it from him because he knows me so well. We all need someone who knows us that well so that we can be honest about how we feel. I’m thankful to have Frank and my friends.
You’re so welcome Jenny! I’m happy that you could connect to this post. So glad to hear that you have great friends and your husband who you can’t hide your feelings from because he knows you so well – that is a wonderful thing. Thank you for reading my blog and sharing. Take care!
Thanks
You’re welcome Javier!
Dearest Valen,
My heart hurts thinking of all you have endured. I admire your strength and vulnerability so much. I truly don’t know how you suffer so much, yet bring the light to so many, myself included. OTHER-WORDLY WARRIOR!! I am PRAYING this new PT is about to bring you intense, immediate healing and pain relief! XOXO~ Julia, Your Biggest Fan
You are so sweet, Julia! Thank you for this beautiful message! I can’t express enough how grateful I am for your friendship and support! You help brighten my challenging days! I greatly appreciate the PT prayers. I’m oh-so hoping for those results. I’m thankful to be walking this journey with beautiful you! xoxo
Soooo true! Thanks Valen!
You’re so welcome Maureen! xo
Wow…Just wow. I don’t know that I have one. My husband and I are both too stressed taking care on Logan to put more on each other. I need to find someone.
This made my heart hurt as I can sympathize as my parents didn’t lean on one another when I was super sick because they didn’t have any more energy to give at the end of the day for themselves or each other because they gave it all to me. So sad. I’m happy to be your “someone.” xoxo
Hi gorgeous!
I want to thank you for shining light on such a huge issue many of us, including myself, have to deal with every day with the fear of pain as well as expressing it to others. It took me such a long time to be able to say that I’m not ok, or need help and not be ashamed of it. I remember us having a conversation a few years ago about pain and how to keep a balance between life and managing it properly. I also believe it is paramount for all of us to listen to our bodies, keep communication open with our doctors and loved ones when it comes to managing that pain, and be extra careful about medications. Many times we can get caught up in situations that make it difficult, and forget to treat emotional pain differently than how we treat physical pain. xoxo
Hi Christy!
Great to hear from you! 🙂
You’re so welcome! Thank you for sharing your beautiful words of wisdom. I hope you are doing well. Big hugs! xoxo
Thank you for sharing Valen.
It helps.
So happy to hear this, Vik. You are very welcome!!!