What Do Patients With Cancer Wish Those Without the Disease Could Understand About Their Experiences?

Each week on Facebook, Twitter and Instagram, CURE® asks its readers to share their thoughts with a #CureConnect discussion question.

This past week, we asked: “What do you wish those without cancer could understand about your experience with the disease?”

Here’s what some of our readers shared:

• “That just because I don't look sick, it doesn't mean that my disease isn't wreaking havoc on the inside of my body. I was diagnosed with de novo metastatic breast cancer six years ago. While my disease remains stable, the medications and changes in my body is felt every day. (metastatic breast cancer) is treatable but has no cure, so yes, it's terminal and many people don't understand that.” – S.D.
• “Cancer doesn’t discriminate based on age. I heard, ‘you’re too young for cancer’ repeatedly.” – R.J.
• “That it’s a long journey and the effects of it are often lifelong. We’re never going to be the same as we were before cancer.” – G.N.
• “That it's a constant fear that I carry with me every single day. I agree with (a previous) comment that even if you might get yourself to look put together on the outside, on the inside, you might be feeling extreme fatigue or anxiety on a regular basis. Cancer, the treatment and the survival are exhausting.” – T.V.
• “Living on the edge of death is living on a different level of awareness and perception.” – T.S.
• “That it's a very lonely journey even with family and friends around you. They can and will never know what we go through or what goes on in our head. And even though we look well, we are terrified every day of every ache and pain we get in case it has returned.” – O.M.
• “That it may not show on the outside, but it hurts on the inside.” – L.A.
• “While suffering bouts of side effects, worry, never-ending appointments, there’s still laundry and cooking to be done, housework, etc. Life goes on every day but with extra baggage that increases (new problems caused by side effects). Stage 4 ovarian cancer, going into year five of survival.” -V.D.
• “That having cancer does not mean you either get cured or die. Many of us out here are living with incurable cancers and thriving.” – D.K.
• “People don’t lose their battle to cancer. Cancer is a deadly disease that inexplicably takes some and leaves some. Positive thoughts are not required of the patient either. Telling someone to ‘think positively’ just piles the shame on.” – E.C.
• “I have told many that the underlying stress they are feeling now with COVID is like the cancer survivor's experience.” – A.D.

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