Living With An Invisible Illness: Patients’ Stories

Living with an invisible illness can be incredibly difficult. Those around you do not understand the struggle, and they can even discount your illness. Women’s Health talked to three women living with invisible conditions such as multiple sclerosis, rheumatoid arthritis, and lupus.

Kimmy’s Story

Kimmy Delahunty was diagnosed with Addison’s disease when she was just 14 years old. This means that the adrenal glands do not produce enough cortisol and aldosterone, hormones that are necessary to regulate inflammatory response and salt and water levels. They also stimulate nutrient flow and send an alert when blood sugar is low. This means that Kimmy lives with symptoms like fatigue, nausea, fainting, low blood pressure, and more, all of which are invisible from the outside.

She also falls into the category of the four of every ten American adults that live with two chronic illnesses. In 2014, she was diagnosed with lupus. This means that her body’s immune system attacks her own body, resulting in symptoms like fever, joint pain, headaches, and more.

When asked about her experience, Kimmy said that her invisible illnesses have impacted her career, physical health, and mental health. She has to take days off at a time when her symptoms become overwhelming, and they have led her to deal with anxiety and depression as well. She described her experience as “incredibly isolating.”

Part of the reason that she feels so isolated is that she receives so much unsolicited health advice. Total strangers will offer what they think is best for her, even though they may have no idea what they’re talking about. To combat this, Kimmy suggests that others with invisible illnesses open up to those around them about their experiences. This allows them to better understand, feel more comfortable asking questions, and being more respectful. It can also be empowering, Kimmy says.

Ashley’s Story

Ashley Cicala Feyrer was diagnosed with multiple sclerosis in 2009. Because of this, she deals with symptoms like weakness, numbness, loss of coordination, and more. She spoke of how difficult her diagnosis was; she had to step away from dance. It was even harder when others didn’t understand what she was going through. Fortunately, she has been able to stay involved with dance. She now co-owns a dance school in New Jersey, allowing her to do what she loves.

Her biggest struggle is dealing with the anxiety and depression that often comes with an invisible illness. She has found that being open with her emotions helps, especially with loved ones. It has allowed others to reach out and help her when she is struggling.

Ashley’s advice to others is to look at the good in every situation, even if it seems there is none. She suggests that people “make a list of what they’re thankful for.”

Roxy’s Story

Roxy Stewart was diagnosed with rheumatoid arthritis after she gave birth to her second child. This autoimmune disorder causes inflammation in the joints, causing symptoms like pain, swelling, and stiffness. She was also diagnosed with Hashimoto’s thyroiditis. This causes inflammation of the thyroid, with symptoms like weight gain and fatigue.

Like the two other women, Roxy struggles with mental illness that stems from her invisible illness. Depression and anxiety grew from her struggles with embarrassment over her conditions, and she said others didn’t take her seriously. Thankfully, self love and changes to her life helped to alleviate this pain. She began doing yoga, changed her diet, and meditated.

Her advice to others is to realize that many people do not understand invisible illnesses. Explaining your situation to others may be emotionally taxing, but it can be very helpful in the long run. She says that it raises awareness and helps others living with invisible illnesses as well.

To read more about their stories, click here.

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