Wednesday, October 12, 2016

Chronic Illness Awareness

As someone with a chronic, invisible illness, I'm always surprised at how many people don't understand it. My daughter and I both have chronic issues and live with them fairly well, but we're constantly exposed to statements such as "you don't look sick" or "you look normal".  This has been a reminder of how far we still have to go in raising awareness.

My daughter was diagnosed with PDD-NOS (on the autism spectrum) when she was five. She has lived with this disorder her entire life and doesn't let it define her, But she faces an uphill battle everyday as she confronts the enormous amount of misinformation and ignorance that still surround this disorder. She will always have to explain herself, educate others and advocate for better awareness and treatments.

My road began with an eight year journey to discover why I didn't feel well. Through multiple doctors, endless tests and years of frustration, we finally found out about fibromyalgia. As I started to educate myself, I found out quickly why so many with this illness give up and want to quit fighting. What little information about it is so confusing and contradicting, we have no way of knowing what is accurate. Part of this is simply not knowing what causes it, but there's also the endless websites offering up "cures" for this. 

Invisible illnesses lead to so much stress, not just for the person with it, but also for their family members, that many marriages end over it. It's a huge load to take on as someone's caregiver. 

More needs to be done to raise awareness and bring about better treatment options and support for the thousands of people that are dealing with this every day.

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