Living with a Rare Disease: You are not Alone

13 years ago, after being diagnosed with a chronic illness, Lisa Copen couldn’t sleep.  She was trying to figure out how to manage her new normal. She just wanted to get off of the rollercoaster of emotions on which she felt trapped, and step onto a stable platform somewhere between acceptance that her illness would be forever, and assurance that she would figure it all out. Somedays and nights were more manageable than others, but she knew that the ride would never really stop.

Lisa recognized that it was not just the chronic pain, but the emotional frustration of feeling like she, and so many others IIWK13were fighting an invisible fight every day, that no one could see, never mind understand. She realized that during the toughest times, all she needed was to hear that someone saw her fighting, acknowledged that she was fighting, and told her that she was not alone.

Today, wraps up the since annual Invisible Illness Awareness Week  Campaign in 2015 and we aren’t going to wait until next year to publish memes and stories about fighting an invisible fight.

Patient Worthy™ wants the chronic and rare disease community to know that you are not alone.  If we are not living with a condition ourselves, we are loving or working with someone who is. People living with invisible illnesses are people first.

We see you fighting. 

We do not define you by your disease.  

We want to share your bravery and triumphs, difficulties and hardships alike.    

IIWK10We met and featured 17 incredible patients and caregivers this week and we will continue to stay in touch with each of them.

This was Maria’s first time publicly contributing her experience with CRPS.  Although hesitant at first, Bonnie cannot believe the support she has received and has realized how far she has come since her colon cancer diagnosis. Lisa D’s first book is on the Amazon best seller list and has received a 5 star rating with rave reviews.  Shelly and her family got some answers, and are working closely with her neurologist to monitor her new diagnosis of Primary Lateral Sclerosis, PLS.  Oakley’s mom is reaching out to further share her son’s battle with Prune Belly Syndrome and Kidney Disease. Melissa is gearing up to continue sharing her experiences living with gastroparesis, as is Carla with CRPS. Hannah is going to keep smiling and singing, Benjamen is becoming quite the professional, and Charlie is well on her way to becoming Charlie 2.0! Virginia is rekindling her relationship with her guitar, Caroline‘s ambition will continue to prevail, and more from Samanta is soon to be shared in the coming weeks.

Our team feels euphoria today, knowing that a tangible difference is being made in the lives of those we reach, and it makes all of the work we do here at Patient Worthy™ so worth it. It is our mission to deliver unceasing information to patients, caregivers and advocates alike, to root for new treatment options, support spreading awareness and encourage conversation and community.

You can guess pretty easily about the pain and suffering someone is experiencing and sympathize, but to truly understand what others are going through when you can’t see it, you have to listen. The more we listen, the more we pause to empathize, the more we share experiences and stories, the stronger we will become. Together we will continue to help each other, raise awareness, and fight invisible fights.


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