A while back I had an appointment for a regular checkup with my doctor. Every 3 months I go in for blood work, refills on my medications, and a general check on everything going on with my body and mind. Having Lupus, Fibromyalgia, Thyroid, and Type 2 Diabetes, it’s important for me to stay on top of things. All of my adult life has been filled with regular and not so regular medical appointments. As you can guess, that doesn’t mean I like it!
Being sick is nothing new to me. I was a sickly child in my younger years. Back in the 1960s, little was known about the autoimmune diseases I would later be diagnosed with in my twenties. I absolutely hated going to the doctor as a child. Most children from my era will remember that almost every doctor’s appointment would end with a shot! I would either get one for infection or an inoculation. I felt like a human pincushion as a kid. And so, began my life- long dread for doctor appointments, and my sometimes- overwhelming anxiety to keep them.
When I was around 19, I remember a friend of mine encouraging me to visit a doctor for a chronic sore throat. She made a statement that stuck with me. She said, “Wait till you have a baby, all your inhibitions about going to the doctor will end.” She was right. After carrying a child for 9 months and being poked, and looked at by a room full of strangers, you tend to let your guard down.
However, something changed after the births of my first two daughters. I felt overwhelming fatigue, joint and muscle pain, low- grade fevers, hair loss, digestive issues, mental problems, and constant infections. These symptoms were chronic and on some days debilitating. It was very difficult to care for my young children and keep up with our home. I felt like I had the flu, and it would not go away. I was miserable.
Thus, began the long process of seeing doctors for an answer. I just needed to know what was wrong with me so I could deal with it! The family doctor I was seeing at the time told me it had to be stress. He said I was too young to be so physically ill that my being home 24/7 with 2 babies was too much. I knew he was wrong. So off I went to find another opinion. And another, and another. After getting a referral from a friend, I made an appointment with a female physician. I was told she was easy to talk to, and God knew I desperately needed someone to listen.
I went to my first appointment with Dr. Jennifer with a long, handwritten list. I handed it to her and said, “These are my symptoms. We have great insurance and meet our deductible for the year. Do every test you can think of and don’t stop until you can give me a diagnosis. I am SICK, and I cannot live like this anymore!” She listened, really listened! She was the first person I had spoken to for months that truly believed me. It wasn’t all in my head, as one doctor had told me. It was real, and it was ruining my life.
I literally went to every specialist known to man and endured every test they felt necessary. There were three full months that, in every single business day, I had a test scheduled. I knew my way around the hospital like I worked there. It was hard at times, of course, but I knew something was wrong, and I was determined to find an answer.
After a year and a half of visits and medical tests, Dr. Jennifer called me to her office. This lady was a pro. I have never met a doctor since with her incredible thoroughness and caring bedside manner. She truly loved her patients and wanted the absolute best for them. There were several times that I made an appointment with her at the last minute, upset and weary from my plight. She had instructed the front desk to fit me in any time I called. On three occasions she didn’t charge me for my visit. Now that is a dedicated, caring doctor!
When Dr. Jennifer & her nurse came into the room where I was waiting, she looked at me and began to cry, and then the nurse began to cry. Dr. Jennifer said, “It’s Lupus.” I did not know what Lupus was or what a long road I had ahead of me. She informed me it was mainly affecting my Central Nervous System, but I was also having Lung and Kidney involvement. All the other symptoms were just par for the course with Lupus. My body was literally attacking itself, which explained the constant infections. I had a lot of inflammation inside of me. That explained the unrelenting pain.
That was in the 1980s. I am so very grateful that now in 2021, almost anyone you talk to knows about Lupus. When I was diagnosed with Lupus, it was still being called a death sentence by many doctors. Thank God with research and new medications, that is no longer true for every Lupus patient.
With all the doctor appointments and tests I have had in my life, I still DREAD it! I go through so much more with the dread and anxiety it breeds than I ever go through with the actual visit. Why? I do not know.
I know I’m not alone. There are people who refuse to see a doctor even when they are sick or in pain. My most recent appointment gave me anxiety for over a week. Yet the appointment itself went perfectly! It was pleasant and quick, yet thorough. I told one of my daughters that I spent more time dreading it than the actual visit lasted. It’s all so silly to do that.
If you are not familiar with Lupus, I would like to ask you to take a few minutes out of your day to educate yourself. There are over 15,000 new patients diagnosed with Lupus each year. That means millions, upon millions, of Lupus patients out there are dealing with this chronic disease every day. Someone you know and love may be suffering, and you don’t know it. People with Lupus often look perfectly healthy. Having loved ones who at least try to understand what we go through is part of our ongoing battle.
Thank you for reading my story, and I hope you are well.
Dale Divine says:
Hi JoAnn. I googled Lupus as I wasn’t that familiar with it. I learned a lot about it.
I’m sorry that you’re in a lot of pain.
It’s amazing how many doctors are borderline “quacks” and act like a lot of your pains and aches are in your head. You keep on hanging in there girl. My thoughts and prayers are with you.