The Mighty Logo

The Mistreatment of People With Lyme Disease Needs to End

The most helpful emails in health
Browse our free newsletters

Since it’s Lyme Disease Awareness Month, I’d like to shed light on the real difficulties and darkness that comes only with chronic Lyme disease. It’s its own specific nightmare of an invisible illness – those who have it only truly understand how hard each day really is, and why.

Let’s start with the origin, ticks. We don’t know much about these insects. They often aren’t seen as real threats. These bugs can carry up to 16 co-infections, some fatal. Ticks can be as tiny as a poppyseed, so how do we stand any chance against finding a tiny dot on our body? Or on our pets? Knowing this tiny creature has ruined my body and lives just outside my doorstep fills me with fear. How can I walk across grass comfortably again? Or lay on a blanket in the sun?

Once bitten, the bullseye rash may or may not develop. At your primary doctor’s office, they generally run standard CDC-approved testing for Lyme. This does not cover different levels of Lyme disease, or any co-infections. So even if you do the right thing and go to the doctor, get tested, your results are not always reliable. And you may continue living with a disease continuing to destroy your body.

There can be years, actual years and years of people’s lives that are falling apart due to misunderstood symptoms. Jobs are hard to keep up with, relationships are just a struggle. So much is blamed on stress, or our “crazy” mind. It may feel random but after a while, you know when something is wrong, but what?

There’s no cure for chronic Lyme. If you are able to afford or have your insurance cover an appointment with a Lyme-literate medical doctor (LLMD), all your hopes may ride on this one doctor and practice to save you. That doctor can become powerful since we often no longer have resources. And these doctors may be at risk themselves, for losing their licenses or more. Finding the right LLMD can be the make it or break it moment of our lives.

Most Lyme patients don’t just get handed medical professionals who actually understand what’s happening. Often we are ignored, turned away from services, unable to afford help or just don’t know where to go. Many can be very hurtful with their choice of words, and treat us like we don’t have Lyme, actually causing more damage. Any medical professional can lead us down the wrong path. So while fighting for our lives, we have to have the wherewithal to see if this professional first believes in my disease, and actually cares about me as a human.

There are so many treatments available for Lyme, some not led by LLMDs who have better medical knowledge. Experimenting at home with different supplements, Chinese herbs, detoxes and much more leaves us at risk and alone. But some just do not have the resources to get out of the house, get to an appointment, pay for a long treatment, fulfill the requirements of the treatment plan and more.

It it can take years of trying and failing at different treatments to find one that helps. We often have to get worse to get better, physically, as all the Lyme cells die after the medicine kills them. These release toxins that flare up symptoms unless we detox them out. Not many people understand detox, why we need it or how to do it for themselves. Without ridding the body of toxins, there is no getting better.

We don’t know if we will ever get better. Or have a good day today, or a bad one. Most of our time is spent sitting, or laying down. The loss of movement and daily activities can lead to deep mental anguish, such as depression and anxiety, even suicide. There are higher suicide rates with Lyme, which is something we can all work towards preventing. There is a mourning and real grief over the past. We used to be completely different people with the ability to do whatever we wanted. We lose our privilege to walk as far as we like, or to work one day at a real job. There are no guarantees, only hope and the hardest work ever.

We may become forgotten, pushed aside, easily taken advantage of. The path to medical impoverishment is paved ahead and we are being dragged down it. If the government agency in charge of controlling diseases actually considered chronic Lyme to be real, this wouldn’t have to happen. People don’t have to live or die from Lyme disease. Scientists should be able to study this disease without consequences or zero funding. After decades of knowing this disease exists, we should have a cure. We should have giant communities that flock to help us, like people with illnesses that have more recognizable names. We shouldn’t have to pay for everything. We shouldn’t be fighting on our own. Our loved ones should have their own support. The suffering needs to end, but until healthy people see how mistreated we are, that won’t happen.

Imagine your worst cold. For a whole month. But your doctor says it’s gone. And you hurt all over, even your brain is foggy. Your family and friends say you look great. But you feel like crap. You can’t go to work, or care for your kids. You have to wait, and sit, and hope each day gets a little better. Try it for one day, one afternoon. Then imagine it’s your whole life.

Getty Image by LuminaStock

Originally published: May 18, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home