Jenifer E's interview
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How did all start?
A cold that turned into pleurisy. The pleurisy and fevers wouldn't go away, then joint pain started, and I ended up in the hospital. Then it got to the point that I couldn't walk alone, or take a bath by myself, or even hold a brush or a fork. Since being diagnosed and starting treatment, I am much better, and living a relatively normal life again.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took almost a year and a change in doctors to get a correct diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have seen almost every specialty possible at this point. Rheumatology, infectious disease, urology, dermatology, oncology, hematology, pulmonology, cardiology, nephrology, orthopaedics, gastroenterology, general surgery, and family medicine - these are the ones that I can remember right now. The third rheumatologist that I have seen has been the most helpful. The first just gave me pain medication and want interested in figuring out what was wrong. I refused to take the pain medication because it was too strong and I couldn't function, and she dismissed me from her practice. My second rheumatologist diagnosed me with AOSD, and he helped as much as he could, but he referred me to another rheumatologist that joined his practice a few years later because that rheumatologist (my current doctor) specialized in rare diseases like AOSD.
What has been the most useful thing for you so far?
Having an amazing doctor that actually listens and cares about his patients. Also, being on the right combination of medications that are currently working for me. And having a very supportive family and employer.
What have been your biggest difficulties?
Everything is an adjustment in the beginning. Your entire life changes so quickly. I struggled with depression and anxiety for a while, especially when I could not care for myself and had to rely on my family for basic needs.
How has your social and family environment reacted? Have your social or family relationships changed?
My family is very supportive. I don't go out with friends very often, and I cancel plans if in not feeling well, which leads to losing a lot of friends and making it difficult to make new ones at times. Some people understand, and others don't even try.
What things have you stopped doing?
Going out regularly with friends. I also stopped doing things in order to make sure I was as healthy as I can be - stopped drinking, eating a lot of unhealthy food, stopped eating anything that is not organic, hormone, and antibiotic free as much as possible.
What do you think about the future?
I hope that I will have all of the same experiences and opportunities that I would have had if I didn't have this disease. Im hoping to have a child, but that has been difficult so far. I hope there is a cure someday, and that my experiences will help someone.
So far, which years have been the best years in your life? What have you done during them?
I think I try to make every part of my life the best that it can be. I don't want my disease to define me or hold me back. I have found a career that allows me to work full time. I have gotten married and bought a house. I have worked hard to be able to do everything on my own, and hope to continue that as long as possible. I am trying to have a child now.
What would you like to do if you didn’t have your condition?
Adopt children. Travel more. Help in my community more.
If you had to describe your life in a sentence, what would it be?
I am just like everyone else, and I am trying to life MY life, MY way, and just be happy.
Finally, what advice would you give to a person in a similar situation?
Don't give up, push yourself, things don't have to be different for you. You are not the disease.
