When I was first diagnosed with several chronic conditions, I felt lost and alone. It felt like nobody in my life understood what I was going through.
I had a lot of well-meaning friends, but at the end of the day they just didn’t have the background to understand the magnitude of what I was experiencing.
So, to feel a little less alone, I turned to online support groups.
On Facebook, there are hundreds of groups for those suffering from chronic illnesses. I joined the groups and started reading about others’ experiences. Members of these groups got me. They could relate to what I was going through. While our symptoms may have been different, our experiences often looked similar. We each were facing some level of debilitation. Chronic illness was changing our lives.
After a while, though, being part of Facebook support groups began to grow draining. I’d see posts pop up in my newsfeed when I was just trying to think about other things. Sometimes, the discussions would bring down my mood. What, at first, was a place of support seemed to turn into a place that drug me down.
I thought about leaving all of the groups. I thought about not talking about illness anymore and just avoiding the subject altogether. But, still, I felt this sense of calling from God to connect with others who are suffering to help bring a little hope. It didn’t make sense for me to completely leave the groups when I desired to help encourage others. It was also good for me to keep learning about what others do for treatment so I can make educated decisions when talking with my doctor.
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.
Life with a chronic illness can be incredibly hard. Most of us who face chronic health issues have one thing in common: our lives do not look the way they did before we got sick. No matter the level of debilitation, the symptoms we face change the way we function.
Changes may be big or small depending on the severity of symptoms at the particular time. For some, it’s a roller coaster of symptoms that get better or worse (or both) each day.
Some people are able to be functioning members of society, while others are confined to their homes, unable to get out into the world to do things as “normal” as grocery shopping.
I’ve been in both camps. I know what it’s like to try to manage a full-time job while very ill. I also know the challenges of being unable to get out of bed for long periods of time. In both situations, my life was vastly different than it was when I was healthy. Accommodations had to be made to conserve energy and meet my needs. I was often discouraged.
So, how do we make the most of our situations?
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!