What to Do When Others Don’t Understand Your Chronic Illness

What to Do When Others Don't Understand Your Chronic Illness

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.

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Making the Most of Life with a Chronic Illness

Making the Most of LIfe with a Chronic Illness

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?

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5 Ways To Pray When Lyme Symptoms Flare

5 Ways to Pray When Lyme Symptoms Flare

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!

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Trusting God When Healing is Slow

Trusting God When Healing is Slow

The process of healing from chronic illness (or at least getting to a place of stability) has gone nothing like I thought it would.

About fourteen months ago, I was officially given names for the host of symptoms that gradually led to the debilitation of my body. I saw various symptoms come and go over a period of five years, but it wasn’t until February 2016 that my health began to decline to the point where I needed serious help to get better. By the time of diagnosis, I was exhausted, in constant pain, unable to function at work, and deeply depressed.

Many days of research, blood work, and doctors appointments led to the discovery that I had Chronic Lyme Disease, Chronic Fatigue Syndrome, several co-infections, Hashimoto’s Thyroiditis, and more.

For some, receiving test results that pointed to multiple conditions and food sensitivities would be devastating. But for me, it provided a glimmer of hope. I finally knew what I needed to treat so I could move forward toward better health. I had a plan for healing, and I love plans!

In my typical Type A fashion, I followed my doctor’s treatment protocol to a T. This meant giving up all my favorite foods and focusing only on the things I needed to get better. I had to quit my serious Reese’s Peanut Butter Cup addiction and instead fill up on Vegan Chocolate Shakeology and a (mostly) Paleo diet.

My health protocol was overwhelming, sometimes consisting of 60+ pills a day. My weeks were filled with detoxing, sleeping, lying on the couch while listening to podcasts, and working as much as possible to maintain some sense of normalcy in the office and get a paycheck (gotta pay for all those supplements and meds!).

I was doing everything “right” in my journey of healing, but instead of finding stability, any step forward was met with two steps back.

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Resting Well When You Have a Chronic Illness

Chronic Illness - Rest - Lyme Disease

Rest: a key component in healing and keeping symptoms at bay when facing a chronic illness.

We all know we need it.

We likely crave it.

Many times, our bodies won’t let us go without it for too long because there’s crippling fatigue involved in the challenges we face.

However, even though I know that rest is essential in my battle with Lyme Disease, I often find myself unable to adequately rest. Even when I want to rest badly enough that I’d give up almost anything for it, I still fall short when it comes to resting well.

Why is this? How could something so simple be incredibly difficult to actually obtain, especially when I spend the majority of my time in bed (the place where rest is supposed to happen)?

It may seem crazy that even though I “rest” all the time, up until I got serious about being kind to myself, I rarely felt like I was actually resting when I rested.

There are many contributing factors to this, including the symptoms of fatigue and insomnia that come along with Chronic Lyme Disease, however, I’ve recently realized that it goes deeper than that.

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