Lupus Doesn't Define Me

By al1999owl

1 min read

Last updated: April 2022

I started having symptoms of SLE in 2016. I was just 16 at the time.

Misdiagnosis

In the beginning, I had mild joint pain and a horrendous case of scleritis, which was misdiagnosed as pink eye. Eventually, a few months later that pain had pretty much subsided, thankfully.

The following year my joint pain got worse. I was still in high school, I ran cross country. I knew something was wrong. It hurt so bad to run but I had a very difficult time explaining it to my coach and parents. It wasn’t just one thing that hurt- it was everything. I was so tired.

Surviving high school with lupus

Finally, at the end of senior year I ended up missing pretty much the whole month of May due to how sick I was. I was at the doctor's office literally every other day. I had to quit both jobs I was working. Three days before I graduated high school, I was diagnosed, Lupus.

Dealing with denial

I definitely had denial at first but even though it is a difficult thing to deal with every day, I feel it has bought me closer to God and those I love. I am thankful to be here and feeling better recently. Lupus doesn’t define me but it is a big part of my new life. I am thankful to be here and learn how to do things in a new way. :)

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?

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Eric Chiyembekeza Moderator
<inline-mention username="al1999owl" user-id="4164126"/> First, thank you so much for sharing this story with us! I hope that you have found that this community can be incredibly supportive and helpful. I can only imagine that being diagnosed at a relatively young age was difficult. There are a TON of other things going on during that time in our lives that can make just "growing up" hard enough! I applaud your strength. Have you found your approach or coping methods have changed over the years as you have gathered more information? -Eric, <a href='http://Lupus.net' target='_blank' rel='noopener noreferrer ugc'>Lupus.net</a> Team
Arlene
Your struggle with tinnitus is understood as I also have Lupus and tinnitus. It is extremely frustrating .My sounds are like buzzing insects. If I am focused on reading or deep in conversation I do not notice it but if I am watching TV the sounds are constant .I hope you can get help. I also am searching for a solution. I have an appt. for hearing aids due to hearing loss and they sometimes help with tinnitus. Arlene
1. Arlene
 <inline-mention username="Amber Blackburn" user-id="2035903"/> Thanks Amber. I tried to do the before survery and no matter how I tried I could not get the second questions to go through. Arlene
2. Amber Blackburn Moderator
 I hate that it didn’t work for you. But thank you so much for sharing! Amber (lupus.net team moderator)
Racquel H. Dozier Moderator
<inline-mention username="al1999owl" user-id="4164126"/> Thanks for sharing your story. The scleritis was one of my signs early on as well. I'm so happy your current days are better. I love your spiritual connectedness. Keep fighting! ~Racquel~ <a href='http://lupus.net' target='_blank' rel='noopener noreferrer ugc'>lupus.net</a> team member
Meghan Bea Moderator
Al1999owl, I loved reading how your perspective has evolved since you were diagnosed. You are able to find the silver lining to living with this disease. -Meghan, <a href='http://Lupus.net' target='_blank' rel='noopener noreferrer ugc'>Lupus.net</a> Team Member