The first time I went to the doctor for my fatigue, I was in my early thirties. I was a mom of three children ages four and under. I told her I had tiredness that I couldn’t shake, and her immediate reply was that of course I was exhausted. Mom fatigue, which results in what we joke to be “mommy brain,” was common. She ran basic labs and found that the only issue was that my vitamin D3 was a little low. The solution was to start supplementing, and it could take a few months to see an increase in energy.
My fatigue ebbed and flowed for years. I didn’t usually take note of it. Between working, raising four children, and living with a chronic autoimmune disease, being tired is my norm. When I thought about it, all my mom friends are tired. It seems that craving a daily nap comes with the job. I told myself I needed to go to bed earlier instead of Netflix-binging after putting the kids to bed. I sipped coffee throughout the day, and I kept taking my D3. After seeing the doctor two more times for exhaustion and having more labs done, I was sent to rheumatology where I finally got my answer. My fatigue wasn’t normal. I have lupus.
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ANNOUNCEMENT 📣 Since April, I’ve had weird symptoms. Fatigue. Stiffness aches. I was referred to rheumatology. It takes a longgggg time to get an appointment. I didn’t present as anything in particular (your girl is always such a puzzle), so more labs and X-rays were ordered. 🩸 I got the results the next day— and of course, took a pic to commemorate. I have “mild” lupus. Of course, my medical anxiety goes on high alert — immediately. 🚨 But after some calls and research, I’m super hopeful. I have the best doctors, my other labs are pretty freaking gorgeous, and my body inflammation is super-duper low. We joked how “special” I am. I mean, come on. #type1diabetes plus #breastcancersurvivor and now #lupus ?! Is there an award for this? 🥇 bad news: I am currently in a “flare” and feel desperate and awful and obviously whiny 😫 in conclusion, #2020 is the actual worst, but I have “warmest regards” (if you know what show this is from, drop a comment) for my support system, my faith, and summer (because school + covid was a dumpster fire). ☀️ So, who wants to chat #lupus with me? I’m brand new to this! Don’t DM me any shakes or supplements or EOs, mmmkkk? I need real talk, not a sales pitch. I’m ok with my choices. 👇🏼👇🏽👇🏾👇🏿 . #lupusawareness #lupuswarrior #type1diabeteslookslikeme #breastcancerawareness #strongwomen #whitesugarbrownsugar #summer2020 #autoimmunedisease #type1warrior #type1diabetes #breastcancer #sundayvibes #sundayfunday #sundaybumday #chronicillness #invisibleillness
It’s true that many of us moms are almost always tired. Who can’t use a good nap or a solo vaca? After all, we are never left alone. Our kids need snacks, diaper changes, homework help, and a referee for their sibling arguments. We try to balance many duties and roles and aren’t surprised when we crash into bed each night and hit our snooze buttons in the morning. I’m not sending you into a panic. If you’re tired, it doesn’t mean you have lupus.
Being tired wasn’t my only lupus symptom, though my additional symptoms only hit hard during the past few months. I was experiencing some odd and aches and pains, particularly in my fingers and toes. I would also wake up, after an uninterrupted eight hours of sleep, and feel stiff and heavy. It would take a good hour of being up and moving for me to begin to truly wake up. I felt good after working out, but would predictably grow tired a few hours later. With four kids, I couldn’t just take a serene midday nap. I just pushed through while waiting out the three months for my rheumatology appointment.
In the meantime, I did research on vitamin deficiencies, restless leg syndrome, thyroid disorders, and rheumatoid arthritis. I am that patient who spends too much time looking up possible medical ailments online and trying to self-diagnose. Newsflash: this isn’t ever a good idea. Lupus was among my many searches, thought I quickly dismissed it because I didn’t have the vast majority of typical symptoms. I didn’t have the lupus “butterfly rash,” for example. I did a few experiments, like skipping coffee for a few days, to see if it made a difference. Maybe I was over-reliant on caffeine? I went to bed earlier, which made no difference.
I did the right things. I brought my symptoms to my doctor’s attention, multiple times. In fact, the second time, the doctor told me that if my symptoms persisted, she would refer me to rheumatology. I later learned that lupus can “flare” for a time, and then physical effects fade away for a while. I also thought that going to a rheumatologist seemed rather drastic for random struggles and moderate tiredness. Specialist appointments are expensive, too. Why go through all that for the doctor to smirk and tell me what I kept hearing, that I was simply mom-tired?
I’m very thankful that I finally went to rheumatology. I wasn’t diagnosed at the appointment, but I was listened to by an empathetic, no-nonsense, knowledgeable nurse practitioner. She ordered more labs and hand x-rays (to rule out rheumatoid arthritis). I had the lab draw the next day, anxious to get the results. The day after that, the NP called me. My numbers weren’t bad at all, but they did indicate that I have lupus.
I tried to resist researching my new disease, afraid of going into a depressing rabbit hole of information. However, I do believe that knowledge can be power. I didn’t know much about lupus at all, except that two of my friends had it. The CDC defines lupus as “a chronic (lifelong) autoimmune disease that can damage any part of the body. With autoimmune diseases, the body’s immune (defense) system cannot tell the difference between viruses, bacteria, and other germs and the body’s healthy cells, tissues, or organs. Because of this, the immune system attacks and destroys these healthy cells, tissues, or organs.” Yikes. So this doesn’t sound hopeful, but I didn’t want to stop there.
A friend of mine has volunteered for The Lupus Foundation for years, so I did more digging. I learned that it takes six years on-average to be diagnosed with lupus, and 90% of those diagnosed are women, many of whom are childbearing age. The disease occurs two to three times more often in women of color than white women. We have a range and severity of symptoms which can come and go, making lupus difficult to diagnose. The foundation cited that many have to see up to four doctors before being accurately diagnosed.
Lupus is tricky to diagnose because its symptoms overlap with many other conditions. The Mayo Clinic reports that the most common symptoms of lupus include fatigue, joint paint, skin issues that worsen in sunlight, shortness of breath, fever, chest pain, shortness of breath, headaches, memory loss, confusion, and dry eyes. Diagnosis occurs when the doctor compares very specific lab work to the patient’s symptoms.
I truly believe that getting an accurate diagnosis is a relief. There were times I doubted my instincts and the signals my body was sending me. Maybe I really was mom tired, and I should accept this as my norm rather than worry something else was going on? One thing I’ve learned, from my first autoimmune disease diagnosis of type 1 diabetes, to surviving breast cancer, and now having a second autoimmune disease, is that women have an intuition that should never be ignored. We know our bodies best, and we need to listen to them and advocate for our needs.
You are worthy of being heard and understood. You deserve to know the truth of what’s going on in your body. After all, it’s the only one you have.