A crisis strikes.
Hope appears lost.
There is pain, discouragement, and feelings of uncertainty.
You’re not sure what to do.
Life with a chronic illness is full of ups and downs. At certain points, the ups don’t reach very high and the downs seem to go deeper than you ever imagined.
Things are hard. There’s no denying that.
But what happens next will determine the the character of your life.
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.
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.
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.
Some days on the journey with Lyme Disease are harder than others. It’s all up and down, which makes feeling stable something to be desired, but not grasped.
It’s interesting how different our experiences with Lyme Disease may be. For some, just leaving the house to go to the grocery store is a major victory (that’s been me!). For others, they homeschool 4 kids and remain active in church. Others may work part-time but spend every minute outside of work resting. Chronic Lyme Disease can be a debilitating illness that affects each of us differently.
But, one thing we all seem to have in common is that symptoms come and go. They increase and decrease. The pain migrates to various parts of our bodies. There are flares and Herxheimer Reactions.
While in the midst of difficult symptoms, I am aware of what is happening with my body. I know the pain is bad and I begin to get used to it. It’s somehow expected as I wake up each day.
However, if I have a few “good days” in a row (good is all relative…), I begin to be shocked or discouraged when symptoms increase, either by flare or Herx. I may have started out content on the difficult days, but when good days come, they bring a glimmer of hope for more better days. Then, when a good day is followed by a bad day, I grow more depressed about my current situation.
That’s why prayer must be the first thing I do when symptoms come on stronger. I have seek God in it before I allow my sinful nature to take over. My tendency is to grow bitter and become angry, but I know that letting my mind engage in that kind of thinking is never helpful!