Margo Deihl InterviewMargo Deihl in Faces of Arthritis T-shirt

Margo Deihl began to show symptoms of juvenile arthritis at age 8 and was diagnosed at age 9 with scleroderma with an overlap of juvenile rheumatoid arthritis. She has not let that diagnosis stop her from pursuing music-she plays the violin-or from being a college student. She is in her sophomore year. A few thoughts from Margo on how growing up with JA has shaped her.

Q. Do you feel like you have ever had to put on a façade to cover up your arthritis? Why?

I never feel like I need to cover up my arthritis because it is something that has become such a huge part of my life in many positive ways. Arthritis has impacted me negatively as well, but it has made me a much stronger person from the inside out.  I don't want arthritis to define my abilities, but only reaffirm my capabilities as a strong young woman. I have such a huge support system of God, family, and friends, and I know that those who love me will never think of me in a negative way on account of my arthritis.  I want to channel my pain into passion for the cause, be proactive, and put arthritis in the spotlight so that people can see the need caused by this disease that affects one in five Americans.

Q. What do you think is the biggest myth about arthritis?

The biggest myth about arthritis is definitely that it only affects older people.  I addressed this myth in a college communication class, with a presentation titled "Arthritis: Not Just Something Your Grandparents Get." Occasionally, I still get surprised responses when I tell others that I have arthritis, and this may be due to the fact that the majority of people associated with the disease are either grandparents or older adults on commercials for arthritis medications.  This myth is a huge reason why advocacy is so important - we must address the misunderstanding that arthritis only affects older Americans and set the facts straight in order to effectively reach everyone who has this disease.

Q. What is your response to someone who just thinks arthritis is an old person’s disease?

I tell them that they are WRONG!  People need to be made aware of the truth - arthritis impacts both the young and old.  It would be great to create more innovative ways to reach a community that may not know this truth and bring awareness of a growing need - the nation's #1 cause of disability!

Q. What do you want the world to know about arthritis?

I want the world to know first of all that you do not have to be in a wheelchair to have arthritis and second of all that arthritis is unpredictable.  I think that many people have the stereotypical arthritis patient in mind when they think about arthritis: an older adult either in a wheelchair or using a walker, or even someone who is crippled - all affects from the disease that are visible.  Unfortunately, people who believe in this stereotype are missing the people like me, the younger people, who suffer every day, yet appear fine to the naked eye.  Also, arthritis is very unpredictable.  I feel that this fact about the disease is not understood. I may be feeling great one day and go running, and then two days later, I have a hard time walking.  The world must realize that arthritis does feel the same each day, but the effects can vary from day to day.  If the world knew these things about arthritis, I know that the disease would be better understood, and people would have a sense of urgency to do something about it.

 

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