Spotlight Story Program: Emily’s Story

Meet Emily Levy

After years of mysterious illness symptoms and suffering, Emily Levy was finally given a diagnosis of neurological Lyme disease, but that did not stop Emily for achieving her dreams.  Now as a successful boss lady and creator of the company Mighty-Well, Emily has decided to take her experience and give back to others in the invisible illness community.

My name is Emily Levy and I am the CEO and Co-Founder of Mighty Well. We create stylish and functional medical accessories.

I am a graduate from Babson College and I have severe chronic neurological Lyme disease. I first got sick in 7th grade, but because I never had a “bulls eye” rash, doctors misdiagnosed me with acute mono.

Over the next seven years, ten different doctors misdiagnosed me.

I was told that I was tired all of the time because school started early.

I was told that I had joint pain because I played sports and I did not stretch.

I was told that I had neck stiffness because I went to bed with wet hair.

I was told that I was depressed and anxious because I was a “moody teenage girl” who just needed to go to therapy. I was put on antidepressants.

My parents have spent about $100,000 out of pocket since I first got sick in the 7th grade to pay for all of my medical bills. I was hospitalized twice for what we now know were neurological Lyme symptoms. I had a PICC line for 6 months while at college to treat my Lyme symptoms and at my worst; I was taking 52 pills and supplement a day. All paid for out-of-pocket. I go to NYC once a month to see my Lyme Literate Doctors because I cannot find the adequate level of treatment that I need in Boston.

On a daily basis, I have chronic fatigue, chronic joint pain, word confusion, sound and light sensitivity, head aches, trouble controlling my body temperature, dizziness, nausea, change in mood, vision changes, irritability, memory loss, difficulty controlling my limbs, and word finding issues.

To everyone, on the outside I look like a “normal” young woman, but people don’t know how I am suffering on the outside. To get through the day, I smile and try to live my life the best that I can. I plan my days around my nap schedule.

I am so thankful to all of my nurses, friends, and family who did “get it” and who were patient with me. For two years I went to see a psychologist because I was told that all of my symptoms and things I complained about were a result of me being a teenage girl or that I was having “growing pains”. I would encourage parents and health specialists to look deeper at a teenager when they say that they are in pain. We know our bodies and if something feels weird…then there is something probably not right. Don’t write us a prescription and tell us to go away. We need your help to get better!