What I wish others understood about living with chronic illness
Sharing our story to increase awareness and combat misconceptions
I’m often surprised by the general lack of understanding about chronic illness and rare disease, which reminds me just how important it is to share our stories. In doing so, we can combat common misconceptions.
Many friends and acquaintances knew about our daughter Grace’s declining health and eventual diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). However, I don’t think many have grasped the full impact the disease has had on Grace’s life. Three years after her diagnosis, some people are surprised to hear that her medical problems are ongoing.
I wish everyone understood the following aspects of living with a chronic illness like LEMS.
Not all chronic illnesses are visible
My daughter may look like a healthy teenager in some of the pictures I post on Facebook, but that doesn’t mean she isn’t seriously struggling. Her LEMS symptoms aren’t visible to most, but they’re still life-altering.
Be cautious about giving unsolicited advice
Well-meaning people have hurt me deeply with unsolicited advice. For instance, some have suggested that Grace’s illness was caused by issues like her diet or even the cleaning supplies we use. Although these people are usually just trying to help, their comments leave me feeling guilty and responsible for my daughter’s health crisis.
Only ask if you really want to know
Talking about my daughter’s illness is costly, as it’s an emotional topic for me. I only talk about it with people I trust to be gentle with me and my loved ones. If you aren’t really interested, please don’t ask for details regarding Grace’s illness. It’s not something that can be summed up in a few words. Rare diseases like LEMS take time to explain.
Those living with chronic illness aren’t weak
In fact, the opposite is true. They’re strong warriors fighting to live their best abundant lives. My admiration of my daughter has grown exponentially as I’ve watched her live with muscle weakness and debilitating exhaustion. Her tenacity is awe-inspiring. She fights every day to do what many others take for granted. Grace never complains or feels sorry for herself, even when her body forces her to miss out on something she really wants to do. She is the strongest person I know.
I’m quick to forgive those who hurt me along the way, as I know their intentions are not mean-spirited. Mostly, I’m reminded that sharing our experiences is crucial to improving understanding and awareness of chronic conditions. Hopefully, this will lead to more intentional support and encouragement of those in our community.
What do you wish others better understood about living with chronic illness? Please share in the comments.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.
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