A life with debilitating chronic illness can be isolating.
I know this firsthand.
If you’re reading this post, you may also understand the isolation that comes when chronic illness keeps you from living what many would consider a “normal life.”
In this rough season of treating Lyme Disease and other chronic health conditions, the majority of my time has been spent in bed.
At some points, I could barely leave my apartment once a week. My boyfriend would come by with groceries or supper to help get me through the time until I had enough strength to make it out again. Occasionally, another friend would stop by to visit or bring a meal.
I had interaction, but it wasn’t often.
Long weeks of being alone can take a toll on a person.
I ran into a friend today.
We bumped into each other at the polling place as I went to cast my vote for school board. She was working the polls as she does each election.
This is a friend I used to work with on occasion in my previous position. I always enjoyed getting the chance to work with her.
Today, she asked me about how I’m doing. It’s a fair question that people ask when they see me around town. They care. They want to know more. But the fear of answering this question sometimes causes me to turn the other way when I spot a neighbor in the grocery store. It also leads me to walk past an acquaintance in a restaurant, avoiding eye contact and hoping they don’t notice me.
Avoidance behaviors can quickly become my everyday existence if I’m not careful. But having to explain my complex health situation to others adds to the anxiety I’m already trying to get under control.
So I struggle with explaining my current life situation to other people.
Lyme Disease Treatment.
The process has been hard (which is an understatement).
Many days, I didn’t know if I could go on.
I’m not overdramatizing it, either.
It was that horrible.
I often felt lost and alone.
I knew God was there, but I wondered why I couldn’t feel close to Him anymore.
Brain fog was thick, and I felt like I was losing my mind.
I’ve finally gotten to a place where I’m a bit more stable, so I’d like to share a few thoughts on the treatment process.
6 Things I’ve Learned While Treating Lyme Disease:
1. I must be my greatest health advocate
Even with excellent doctors and people in my life who care about me, I realized early on that if I did not speak up for myself, I wasn’t going to be helped. Lyme Literate Medical Doctors know what they are doing when it comes to treatment, but they don’t know how it feels to be me. They don’t know the exact pain I’m feeling or how treatment is affecting me. Even before diagnosis, I learned that I had to keep prayerfully pressing for answers. Had I not kept asking questions and seeking information, I’m not sure what kind of shape I’d be in today.
If your health is in a place where you think it’s possible you have Lyme Disease, I am really sorry. This disease can be incredibly difficult to endure, and I wish you weren’t experiencing symptoms. Please know that you are not alone in this.
(I want to preface this post by explaining that I am not a doctor and am not able to diagnose, prescribe a treatment plan, or give medical advice. The purpose of this post is to share insight gained from my own experiences.)
When I first realized that the symptoms I was experiencing could be Lyme Disease, I did a lot of research to determine the best course of action to take, but it wasn’t easy to find accurate information. There were conflicting opinions everywhere.
Often times, even if symptoms would suggest Lyme as a possible culprit, doctors don’t seem to recommend testing. I’ve seen stories of hundreds of people in Lyme Disease support groups who went to their doctors with a whole list of symptoms, but never did their doctors mention Lyme as a possible culprit.
At least once a week I get an email from someone who has stumbled upon the blog and thinks they may have Chronic Lyme Disease. They aren’t sure what to do for testing or treatment. Their doctors either have treated them with two weeks of antibiotics and said they were cured, or they were never even checked for Lyme in the first place. Now these people are at a place of being debilitatingly ill and unsure of what to do next.
Dealing with a chronic illness that most people don’t understand can be isolating. It is discouraging when we can no longer live “normal” lives but everyone else we know seems to be living life as usual.
It gets even more sad when the people who should be closest to us, like family, seem to disregard the pain we’re experiencing.
For me, living with Lyme Disease is complicated because of the misinformation out there about the disease. There’s a big difference between early diagnosed and chronic infections. Like others with different chronic illnesses, Lyme Disease patients often need to try many different treatment protocols before they find something that works. Symptoms come and go, and pain migrates. It’s hard to explain how you’re doing when things can change drastically in a short period of time.
When I was first diagnosed and finally had names for the symptoms I was experiencing, I was always frustrated by the fact that others didn’t understand. I tried explaining, but it felt like I couldn’t express myself enough to make others recognize that I wasn’t able to live up to the expectations that had been formerly placed on me. I wanted people to know that I was sick and my life was a lot different than it used to be. It wasn’t easy to explain.
Over the past year and a half, I’ve learned a lot about explaining what I’m going through.
Here are a few thoughts on what to do when others don’t understand your chronic illness:
1. Accept that not everyone will understand
This was a hard one for me. I am usually effective at explaining my point, so I figured that if I shared information about my chronic illness that others would start to understand. But, I quickly realized that not everyone will understand, and I had to be okay with that. While some people may begin to see what we mean, we can’t expect that everyone will choose to learn enough to comprehend what we’re going through.