At 20, she was diagnosed with an autoimmune disease and given just six months to live. She started aggressive treatment and graduated from college.
The Good Brigade
This as-told-to essay is based on a conversation with Brittany Rudy, an advocate with Lungs&You®. It has been edited for length and clarity.
When I was 19, I started having strange symptoms whenever I was cold. My fingers would get tingly and blue and then go numb. The doctor at my college health clinic diagnosed me with Raynaud's phenomenon, an illness that impacts blood flow to the arms and legs. He told me to keep warm and sent me on my way.
But my symptoms only got worse. I had a chronic dry cough and acid reflux. I lost weight and lived with almost constant joint pain. I went back to the health clinic, where the doctor suspected I had lupus. He referred me to a rheumatologist.
When I saw the specialist, he looked at me and said, "I'm so sorry, you're so young. I think you have scleroderma." He explained that the autoimmune condition causes tissue to thicken. My scleroderma was also causing interstitial lung disease, which made it hard to breathe.
My mom, who had come with me to the appointment, asked what the long-term prognosis was, and the doctor replied, "There is no long-term." He was giving me six months to live, and that was "pushing it," in his words. I was 20 years old.
At first, the emotions didn't hit me. When we got in the car, my mother called my grandma and my dad. She started crying and saying, "What am I going to do?"
I remember feeling angry. I was the one who had just been given six months to live. Why was she asking what she was going to do? Looking back, I can see that I was being selfish. I didn't realize all the sacrifices my mom would make to help me live with this condition.
I went to another doctor who specializes in scleroderma. She wouldn't give me a timeline, but she said that she was going to do everything she could to ensure I would live much longer than six months.
Still, learning more about my chronic condition was a punch in the gut. Instead of celebrating my 21st birthday, I was told the future I'd always envisioned — the one I was working toward in college — was not guaranteed. At one point, I asked about freezing my eggs because I knew I wanted kids. The doctor told me we didn't have time for that; we needed to start aggressive treatments immediately.
I've always been stubborn, and when someone tells me I can't do something, it fuels me. When the first doctor told me I had six months to live, I knew I would make it to seven.
I told myself I was going to do what I could. I would stay in school as long as possible and keep working when I could. I wanted to achieve the things I'd been told would be taken away from me.
I'm proud to say I never dropped out. It took me five years to get my associate degree because of my health challenges. Getting that degree was such a big deal for me because it happened during the most difficult years of my life. After I had my associate degree, I transferred to a bachelor's program and graduated two years later.
Today, I work as a nanny and a legal secretary. I'm 32 and have long outlived the life expectancy I was given at 20. My lungs won't ever get better, but thanks to treatment, they haven't gotten worse.
For now, I'm stable. Still, my life looks different from many 30-somethings. I try to stay active, but some days, I wake up exhausted, and I just can't go to work or walk the dog.
My partner, Cameron, and I have been together for eight years. At first, I didn't want him to know about my illness, and I vowed to keep our relationship casual. The boyfriend I had when I was first diagnosed left as soon as things got serious, and I was afraid of that happening again.
As Cameron and I got closer, I told him more about my scleroderma. By that point, he had already looked it up. He started coming to appointments with me. If he's choosing this life with me, I want him to know what our future might look like.
We still talk about marriage and kids, and move toward those goals. At the same time, we know we need to be prepared for the unexpected. All we can do is focus on building a future together and loving each other today.
