My Story: Brittany Johnson

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What were the steps leading up to your diagnosis?

I went to my family physician with various symptoms over the years. She referred me to a rheumatologist three years ago. Upon seeing the rheumatologist she told me I had pre-lupus. I had never heard of the disorder. I googled everything about the disease. I was clueless. On June 22, 2013 I left work with a really bad sinus infection. Getting sinus infections had been common over the last couple of years. I would usually take an over the counter medication and within a few days I would feel more like myself. This sinus infection however, was very unusual. After taking the medication the infection got worse. I went to a walk in clinic in hopes of finding some relief. The physician agreed that I had a sinus infection and gave me a prescription for something a little stronger. He told me that if my symptoms didn't improve I should come back for more testing. About two days later upon waking up in the morning my head felt as if it was going to explode. I went to the emergency department at my local hospital. The doctor in the ER believed that I didn't have a sinus infection but an ordinary migraine. He gave me a prescription to help with the pain. Anyway after taking this new prescription I passed out. I woke up in the hospital a few weeks later with absolutely no recollection of what happened from the moment of taking the medication. Shortly after awaking I was diagnosed with a rare disorder called Acute Disseminated Encephalomyelitis. This disorder caused extensive brain lesions that are still in the process of healing. On August 21, 2013 at the age of 21, I was diagnosed with Lupus of the Central Nervous System, Lupus Cerebritis, Lupus Encephalitis, vasculitis, and Sarcoidosis.

What lifestyle changes have you needed to make?

One major life change that I needed to make was learning to slow down. I used to work multiple jobs and attend school full-time. I rarely ever slept an eight hour night. I was constantly on the go, always attempting to get as many things as I could possibly get done in the day. I rarely ever listened to my body. Even when I was in pain, I would refuse to slow down. I quickly learned that it just isn't possible to be this way with lupus. I've learned to only take on what I can physically manage at a time. Another change I needed to make was making changes in my diet. Prior to my lupus diagnosis I ate a lot of junk food. There would also be times were I would only eat one meal a day. I learned rather quickly that I cannot expect to get better if I don't make positive changes to my diet.

Who has been there for you? How?

My mother has been one of the most supportive people throughout my diagnosis. She has helped me deal with the emotional difficulties of dealing with a chronic illness. She has also been my advocate when I was unable to do so myself. I don't think I would have been able to make it this far without her help. In addition, my younger sister has also been a great help throughout my diagnosis. She has helped me manage my medications and she ensures I have taken them correctly.

Brittany Johnson - Lupus

Even when I was in pain, I would refuse to slow down. I learned that it isn't possible to be this way

What accomplishment are you proud of?

What accomplishment are you proud of?

Despite Lupus, I am proud that I was able to finish my university degree and attend my graduation.

Despite Lupus, I am proud that I was able to finish my university degree and attend my graduation.

What's your advice to someone else living with Lupus?

My advice to someone else living with lupus is to listen to your body. If your body is telling you to rest or to slow down, do it. You understand your body better than anyone else. If something doesn't feel right or you're experiencing some unusual symptoms go to your physician. Do not give up until you get answers. Having a chronic illness is difficult but if you do not advocate for yourself or have someone to be your advocate your symptoms can get progressively worse.

 

Is there anything else we should know?

I am a 22 year old who loves to travel, read, and scrapbook. I have recently started a scrapbook documenting my lupus journey.

If you do not advocate for yourself your symptoms can get progressively worse.

About Brittany Johnson.

My Story: Brittany Johnson
My name is Brittany Johnson. I am 22 years old. I currently live in Brampton, Ontario, Canada. I worked as a personal support worker, nursing aide, and volunteered with at risk youth. Due to health reasons, I had to switch career paths. I am currently enrolled in a Bachelor of Business Administration. I hope to some day pursue graduate studies in the health management sector. My hobbies include travelling, scrapbooking, and reading. My dream is to one day teach at the post-secondary level; I want to spread awareness and educate individuals about invisible disabilities.
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