Life Lessons

Life Lessons: Living with chronic disease

Studies show about 40 percent of people in the U.S. are living with some type of chronic disease. This brings all kinds of physical challenges but also mental ones.

People with chronic diseases can feel misunderstood, embarrassed about their diseases and certainly can struggle to maintain a positive outlook.

Jean Romano of Emmaus begins each day the same. She wraps her pain-filled fingers in bandages. 

"This doesn't take me that long, depends on how many fingers hurt that day," Romano said.

Romano's hands are the worst right now making day to day tasks nearly impossible. She struggles with an autoimmune disease called Scleroderma- a chronic harding and contracting of the skin and connective throughout the body.

Displaying her disfigured hands and pointed at her one finger she says, "That's the finger right there, because of the lack of circulation, because they can't help me, I'm going to loose it."

Twenty years ago when her disease started, Romano didn't know how debilitating it would be and that there's no cure. But she works every day to embrace what she has, instead of thinking about what she doesn't.

"Everybody has something they're suffering with, it's the level you've accepted and I've accepted that level. Let's say something should happen and I wouldn't be here tomorrow, hey it's all good. I'm okay with that," she said.

Experts say when living with a chronic disease:

  • Have a good support system
  • Educate yourself
  • Watch our for depression

"Know that there's going to be a tomorrow. I can't say it's not going to get worse because it may get worse but, it's okay because you're here and you're around a bunch of people that love you and support you. I think that's a big thing that keeps me going," Romano said.

She said she tries to change her outlook.

"I still have fingers. May not be all 10 but I still have fingers and I can walk and talk and I'm not hooked up to machines," she said.

Doctors say it's normal to feel a range of emotions when you have a chronic disease and the most important thing you can do is get help if you need it.


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