Story: "Just say, 'I don’t know.'”

Woman pictured, not the one who shared her story.

Woman pictured, not the one who shared her story.

Ed note: The woman who shared this story asked that it be shared anonymously. 

For the past 13 years, I have been completely exhausted. What happened 13 years ago, you ask? My second child was born. You guessed it, I was told that I was a new mom and that this “tiredness” (which physically took my breath away) was normal. But I knew that this “tiredness” was somehow different than any other “tiredness” I had experienced. Could it have been a mix of postpartum depression and lack of sleep? It’s possible. I don’t blame the doctors for thinking that.

Long after my son was over a year old, I was still “exhausted.” After a two week bout in bed where I only got up to take care of the kids and then lay right back down, I reached out to my doctor again. This time he said I was depressed. I didn’t agree with him but I was desperate. After he checked my iron and thyroid (which I secretly hoped it was anemia), he prescribed an antidepressant. For two months I took it. When I realized it wasn’t helping with the fatigue, I weaned myself off with no ill effects.

So that I don’t make this a really long story, I will describe the next ten years. I was always exhausted but I could always pull through. I went through a long divorce from a very toxic person (and his family) all the while working at a highly stressful, toxic environment. My nutrition was not the best as I was now a single parent with two mouths to feed so usually they ate first and I ate what they left. I lived on protein powder and coffee. I have always had a naturally lean, strong physique. I was a runner and I worked out regularly, often too hard as it was a mental release from my stress.

Needless to say, anytime I did address my now “fatigue,” I could see the doctor looking me over as I told my story. I knew they were judging this book by its cover for on the outside, at 5’8” and 135 lbs., I was the epitome of health and fitness. When I would describe my symptoms that it felt like I was carrying a backpack full of bricks on my back, that I was out of breath and weak, and sleepy, brainfog, poor recall and memory, the concerned doctors would order a multitude of tests. The tests would always come back stellar and the typical conversation would be something like this: “People would kill for this type of bloodwork! Congrats! You’re healthy! Have you ever talked to a psychologist?” I was tired of the insinuation that it was “in my head” or the advice to exercise, get 8 hours of sleep, or “be less stressed,” so I pushed on as advised. I decided to live with my fatigue because at this point, it was common to hear, “Yeah, I’m tired too” or “You do a lot.” So fatigue like this is normal, right?

I was 28 years old when my son was born. I am now 41 and my symptoms have exploded into something I had never expected. Functionally, my blood work says I have adrenal fatigue so this “pushing on” has taken its toll. All my joints and bones hurt and ache. I feel a wave of exhaustion that covers me in which I can’t escape it—I must sleep. I have fallen asleep in the middle of the day in my car in the Florida heat. Some days I can’t even bear my own weight when I stand up. “Fatigue” is no longer the word to describe it. Some days, it’s full blown debilitating.

Once again, a year and a half ago, I went to a new doctor in hopes of having some quality of life other than taking my son to school, sleeping all day, and getting out of bed just to go pick him up. This cycle of sleeping all day and getting nothing done makes me feel like a loser. I catch myself looking around and wanting to be normal and asking how in the world everyone else functions but I can’t!!? My new doctor chuckled to himself when I told him I had Chronic Fatigue Syndrome. He informed me it was a label for something that doesn’t exist, “like Fibromyalgia,” he said. Boy did I feel dumb. All this time I had an imaginary illness that caused imaginary exhaustion?!! I was too tired to give him a piece of my mind. In my current state, I was borrowing energy from the future so I wasn’t going to waste it on him.

I told the doctor I was depressed because I was. It is depressing to be a highly functioning person and now hardly capable of a shower and blow drying your hair. Kids birthday parties on the weekend? Sure, but that meant an entire day of sleep afterwards just to compensate. I tried four different antidepressants with this doctor over the course of a year, even though I knew I wasn’t chemically depressed. I just wanted relief. I finally gave up that charade and I asked him for a sleep disorder medicine. I had been prescribed this stimulant (and others) in the past for my exhaustion and I was desperate at this point. It would be good to mention that on top of now being married and having mom duty, I was also a full-time accounting student in college (at 40). The stimulants were a band-aid and I knew that. I took them for a year and weaned myself off. Again, I found myself another doctor hoping to find one that listened and knew and believed that my symptoms were real.

Luckily for me, my fatigue ebbs and flows. Blame it on the moon, blame it on my period….not sure but it baffles me and leaves me unable to plan things because I never know if I will be weak or strong that day. My new doctor (God bless him) actually believes in Chronic Fatigue Syndrome and has tested for issues other than the typical thyroid, lupus, RA, and MS – all of which I don’t have thankfully. It was recently discovered that I carry HSV6 which is correlated with Chronic Fatigue Syndrome. His advice was not to take any college classes for now and to REST, REST, and REST. 

I am still enrolled in one class, and somedays I regret that decision. I second guess my abilities to ever be a functioning person in society who actually gets ready for work EVERY DAY. Somedays, I can’t remember or even think. I feel like I am setting myself up for failure and that an accounting degree and obtaining my CPA is way above my capabilities considering my health issues. I am not clinically depressed. I have the best life ever but I am only awake to enjoy about 40% of it. When I am extremely low energy and I shut down the world because that’s what I HAVE TO DO, I feel isolated….I feel like like a loser. I’m at the point physically where exercise helps but there is also a fine line where I pay the price for it. I’m no longer running 35 miles a week or doing bootcamp and circuit training at the gym like I used to in my 30’s. One day of boot camp equates to two days of unconsciousness on the couch. I can’t afford that. Yesterday, I pushed through and cleaned the whole 4 bedroom, two-story house. Today, I dropped my son off at school, went to bed, and woke up an hour before pickup time.

So that’s where I’m at…trapped in an “imaginary” illness with a body that was amazingly strong at one point and for no explainable reason, is no longer capable physically or mentally of anything it used to do. It wears you down. I don’t get frustrated anymore when the medical community tells me to see a therapist, or sleep more, or exercise more. I’ve done all that but IT is still here. It’s okay that they don’t know. But all I ask is that they consider learning about it or just say “I don’t know.” That mere acknowledgement would make more sense than anything else I’ve ever heard.