As far as I can remember, I have always had an intolerance of heat and cold. I can remember at a young age not wanting to go outside in the heat or sun. I would opt for playing in the shade or staying inside to keep the sun from hitting my skin. As I got older, my intolerance for the sun never changed. I would have issues with not being able to sweat and would overheat. Picture it being 100+ degrees in the South with no sweat coming from me. I would overheat quickly and get dehydrated very fast. I would develop these awful rashes and hives for no apparent reason. I would itch to the point where I would make them red and inflamed. This continued for many years with no answers, causing quite a few hospital visits and discussions with my doctor.
When I was pregnant with my youngest son, I had a difficult pregnancy. I was fatigued, run down, and ended up having a C-section. I believed that once my son was born, the fatigue would go away, but it stayed. I woke up tired, went through my day tired, and went to sleep tired. When I went to the doctor, I would get the usual statements: “You just had a baby. Motherhood causes exhaustion. Just take some vitamins.” I dealt with this until after my divorce, which brought some relief. However, I was dealing with a lot of court hearings with my ex-husband. The exhaustion intensified; I was pale and hardly able to get out of bed. I ended up going to my doctor, and she responded, “You are depressed from your divorce,” and tried to prescribe me anti-depressants. But I knew something was wrong.
Thankfully, I went to donate blood, and this is where my answers started. The staff had taken a sample to make sure I could donate. The nurse called me over and told me my iron levels were very low and would not let me leave until I made an appointment. When I called, fortunately my doctor was out, so I was scheduled with her colleague. The new doctor reviewed everything and told me his findings: I had an autoimmune disease, I needed to see a rheumatologist, and I needed iron infusions because I was anemic, not depressed.
I was scared, and my mind kept saying it was something like what my father had—ALS, MS, or lupus. These thoughts played in my head, and I was worried about my children. How would I tell them? Who would take care of them? The appointment with the rheumatologist came, labs were ordered, scans were done, and it was a waiting game. My follow-up appointment increased my anxiety level, but I waited in the office, shaking but hopeful. I remember thinking that if it was MS or lupus, I would be okay, but ALS scared me. I waited, holding my breath.
The doctor came into the room, and I tried to pay attention to what he was saying: “You have Sjögren’s Syndrome.” I sat there thinking, “What is that?” and looked to my doctor for answers. He started telling me what the autoimmune disease was and its symptoms: dry eyes, dry mouth, dry skin, joint pain, digestive issues, and swelling salivary glands. As for my skin, the rashes were also caused by Sjögren’s. He said that Sjögren’s was the least severe of the autoimmune diseases to have, and I sat trying to listen. Part of me was relieved to have a diagnosis, and the other half was angry because I had been ignored over the years.
I was thankful to have my answers, but I realized at that moment that I would have to advocate for myself because I know my body. It has been fifteen years, and I still advocate for myself because doctors don’t know much about this condition. I have extremely dry eyes and mouth, but when I go to the doctor, I get ignored. When I say my mouth is dry, they tell me nothing can help. When I tell them my skin is dry, they give me a cream that doesn’t work. I asked to be referred to a rheumatologist and was told I would be laughed at for going there for this condition. I decided to do my own research and, again, I have advocated for myself because I am my greatest ally.
I have thrived and found peace in my life because I have my answers. My children have been with me through this whole journey. They have helped me research, supported me through my flares, and stood by me the entire time. I would tell anyone dealing with an unknown condition to never give up and keep searching for answers.
