I was 19 years old in 1990. I was a single mother of 2 children and I was pregnant with my third. I went to the doctor because I had debilitating fatigue. My situation was difficult for a 19-year-old. Being divorced and in my situation when others my age were in college and out partying. That is when I was diagnosed with Chronic Fatigue Syndrome. I didn't know what it was. It was supposed to be an answer to why I couldn't get out of bed every day or do everything I needed to do.
When I told others about my condition I was told...
That doesn't exist.
It's not a real diagnosis.
Of course, you're tired. You have 2 kids. All parents are tired.
I'm tired too. Everyone is tired.
It was very invalidating. It made me feel like there was nothing wrong with me and that I was just making excuses. It was covered in shame. I learned to quit telling people that I was diagnosed with chronic fatigue. There are only a handful of people, including doctors, that I have shared it with.
This behavior was reinforced by a conversation in 2017 with a geneticist at the Mayo Clinic in Rochester, MN. I was desperately searching for answers at the time. I wanted to return to my full-time job from, what was at that time, short-term disability. I wanted a pill to fix everything.
I told him that I had mono in 5th grade. That I was diagnosed with Epstein Barr at 19 and then chronic fatigue.
He said that they were all the same thing and expressed doubt that all 3 diagnoses were accurate.
Again my experiences were not being validated. Again, I felt shame. I felt desperate that I had traveled so far for answers and I felt disrespected.
It is now February 2022. That was almost 5 years ago. In that time I have tried to find answers but I have not brought up chronic fatigue to another doctor. I keep trying to find a new condition to blame. I have received new diagnoses but no real answers.
8 months ago I had a major stress of a cut in income along with a bill from my disability insurance of $40,000 for overpayment. That was a huge hit for me.
7 months ago we were preparing to sell our house to pay off our debt and reduce our expenses when we had a minor house fire and had to move into a hotel. 2 cars were destroyed in the fire making us a 1 car family.
6 months ago my dog had to have preventative knee surgery. That was very stressful for me. I tried to give him a reward of a pup cup from Starbucks. He almost died of pancreatitis because his little body couldn't digest that much fat.
5 months ago a housekeeper stole checks from my hotel room and wrote fraudulent checks on my bank accounts. This turned out to be more about my safety than money to me. I don't let housekeepers clean my room anymore.
4 months ago our basement flooded.
3 months ago I was in a car accident.
I was in disbelief as all of these things were happening. How can this much stuff happen to one family?
Covid never went away. In fact, it got worse. People are dying. My friends are getting sick.
We are still in the hotel. Hopefully, it is almost over. We are going to sell our house, finally. The cost of real estate is nuts. Where will we live? I haven't answered that yet.
The reason that I am telling you all of this is to illustrate that I have been under a hell of a lot of stress. Stress aggravates all medical conditions. I have developed high blood pressure and my diabetes has gotten worse despite losing 100 pounds.
Do you know what else stress makes worse?
Chronic Fatigue Syndrome
There have been many days when I just can't get out of bed. There is nothing I can do. Of course, the first thing I always think of is Covid. I have been tested 7 times during the pandemic. It's always been negative. I double mask and use hand sanitizer and am not very social. But I still end up in bed wondering what the hell is wrong with me.
Then I finally remembered. I was diagnosed with Chronic Fatigue in 1990. I have tried not to claim it because of all of the shame and controversy that surrounds it. But it finally dawned on me that all of this stress is causing flare-ups.
I remembered a documentary called Unrest that came out in 2017. It is currently on Netflix if you want to check it out. It was so validating. I am so grateful to Jennifer Brea for making it. It is so validating. When I got to the part where she is speaking gibberish while lying on her front porch I recognized that I had seen my daughter in that situation. I discussed it with my husband and he told me that he has seen me that way too.
Here is the link to the trailer on YouTube https://www.youtube.com/watch?v=JvK5s9BNLzA
I never see doctors when I am this bad. I call and cancel because I am too sick to see a doctor. In fact, I had to wait a couple days to type this because I didn't have the energy.
In the documentary, she talks about how frustrating it is to go to emergency at the hospital. Her husband does too. He mentions how you want to tell them enough but not too much or you won't be taken seriously.
She brings up how many think it is a psychological problem. I actually quit therapy for a while because I was so tired of everything being blamed on mental problems or my childhood trauma.
She talks about getting 6 infections in a year. That reminded me of the last 2 years I was working. I was always on antibiotics for something. Is that why IVIG made me so much better? Too bad my insurance won't pay for it.
She relates it to a light being turned off. I relate to that. I have said that it feels like being unplugged. Or that gravity is too much for me today. Some days gravity is stronger than I am.
I see so many specialists. I wish there was one doctor who understood. One doctor who knows how to fix this.
To everyone who knows what I am going through...thank you. Thank you for being in this with me. I am releasing my shame and doing what I can when I can. I am still a valuable person. I deserve to live. I need to recognize my value.
Things I did with Chronic Fatigue:
I raised 4 children.
I got an associate degree.
I passed the exams to get my series 7 securities license 3 times!
I became a licensed insurance agent.
I learned a lot. Learning is my passion.
I tried a lot of things.
For my next 50 years I am going to celebrate what I have done. Maybe a lot of that is spent in bed but I have met a lot of great people and had a lot of great experiences.
I love life.
Thank you for reading.
