An Increase in Mystery Illnesses
Is it just me or has there been an uptick in undiagnosed health problems lately? I, personally, had my own battle with a mystery illness a year ago- lasting longer than I wanted it to. I also know or have heard of 10 or more people who struggle with not having an answer or diagnosis for their symptoms. When there is no diagnosis, the symptoms are difficult to treat, and they often spiral out of control.
Netflix’s “Diagnosis” follows Dr. Lisa Sanders who crowdsources diagnoses for mysterious and rare medical conditions in a documentary series based on her New York Times Magazine column. The fact that there is a docuseries and column in New York Times Magazine means that this is happening to so many more people than we think. I have heard of people not being able to walk with no explainable reason, headaches for thirty plus years with no cause, and fevers from an unknown origin. Why is this happening to people and where can they find an answer?
I have recently pondered if COVID-19 has played a role in changing the way our bodies work. Has it somehow altered our genetics and how our bodies function? I have asked several physicians this, that I have seen personally, and they all have the same answer, “I don’t think so?”. I am really hoping that some providers have noticed the same trend I have and have taken the initiative to study this increasing phenomenon so that we can finally get some answers.
Unfortunately, when providers can’t find answers from the tests they know to run, they refer you off to someone else. That specialty provider may refuse to see you (because there is an abundance of sick people right now with not enough staff) or they may not be the best in their field. I never had one doctor tell me that they were sending me to the best specialist, it was always just a local office they refer to. My PCP did refer me to The Mayo Clinic after all of our resources were exhausted, but they couldn’t see me based on her referral. I ended up referring myself and getting in. Some physician’s pride can get in the way and if they don’t know what’s wrong with you, then no one will because they are the best. It’s the end of the road. When I had been sick for so long with no answers, I wanted to be seen by THE BEST. If I am being seen for a sinus infection, I pretty much trust any provider to help me. It’s pretty simple. If I need to figure out a mystery illness that has kept me bed ridden for months, I’d like to see someone better than mediocre, which I think is reasonable.
Before I got sick, I was so blind to the fact that, people who were sick, wanted something to be wrong. I would think to myself, why do they want something to be wrong? Isn’t it good news that nothing is wrong? The fact is, they just want an answer so that it can be fixed and have an explainable reason for their symptoms. They want to be justified. I would always pray for a test to come back abnormal so that we would have a direction to go. There was a fine line, I wanted something to be wrong, but not TOO wrong. It also helped me to know that there were other people out there like me. Sometimes I felt like a freak, like I was the only 35 year old person who felt so sick with no answers. It’s not that I wanted other people to be suffering, it just made me feel more normal and like someone else could finally empathize with what I was going through.
Another important point to hit on with undiagnosed conditions, on top of the physical symptoms, is the emotional toll it has on people. Having no answer or relief in sight can cause anxiety and depression. It’s hard not to think, will this ever end or am I going to die? Aside from anxiety and depression, people can also experience grief and loss of their life before being sick. I, personally, was grieving not being able to spend quality time with my husband, kids, and friends, exercising, getting out of the house, and working. I didn’t feel like myself anymore. Check out my vlog with Licensed Professional Clinical Counselor, Brent Flory, for more about grief and loss.
This is where advocating for yourself and taking initiative comes into play. If you want to see the best, you have to research the best. It’s not always an easy task, especially when you don’t feel well. Suffering is not the answer. No diagnosis is inexcusable. There should always be a next step or somewhere to find an answer. So, what now?
A personal healthcare liaison can walk alongside you during this difficult time. LahSET has the time, knowledge, and resources to help find an answer. No need to lift a finger. We will always be one step ahead and advocating for you as if you were our own family member. We want to find an answer as much as you do.
If you or someone you love is struggling with an illness that is undiagnosed, please complete our inquiry form. Our questionnaire is the first step in helping us understand how we can help you. We know it can be beyond frustrating, but we are here to carry that burden for you. We won’t stop until you get an answer or the relief you’re searching for.