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.
2. Politely share information
Be mindful of the ways you share information. Don’t expect that everyone wants to know what you’re going through. Be careful about the posts you share on social media. It can be tempting to share passive aggressive posts that are aimed at specific people who don’t understand what you’re going through. But, be sure that what you share is done out of love. Ultimately, we want others to understand us so that stronger relationships with true support can be built. When we provide the means for others to better connect with us, healthy relationships have the potential to develop.
3. Be honest about how you’re doing
If someone asks how you’re doing, be honest. Tell them how it’s going, whether it’s good or bad. Gauge their response to see how much you should share, but don’t try to hide the fact that you are struggling if things are rough. When we are honest, others have the chance to understand.
4. Don’t complain
There is a fine line between sharing information and complaining about your situation. As difficult as your current situation may be, spending too much time complaining about what you’re going through will not be beneficial for getting others to take you seriously. This doesn’t mean it’s wrong to be honest (see point 3 above), but if the only thing we ever do is complain about our struggles then it becomes a one-sided relationship of support. The other person may be providing listening ears, but, over time, this will become draining for them.
I’ve found that when I enter complaining mode, it just perpetuates negative thoughts surrounding illness. Venting sessions never leave me feeling better about the situation; I always feel worse. Unfortunately, when we complain as a means to try to get others to listen, we may end up hurting our own selves in the process because of what it does to our emotions.
Pray that the hearts and minds of the people closest to you will be open to learning more about your condition. Ask that God would provide opportunities for you to share in a way that will make sense to them. It’s also good to pray for comfort from God because He does understand what you are experiencing and will provide what you need to help you through difficult times.
6. Provide more information to those who want to know more
If you have conversations with others who are interested in learning more about your chronic illness, then this is a great chance to provide more resources for them. If they want to know more, send them links to blog posts, articles, and websites that contain additional information. Start compiling a list of resources that you can share with those who may be interested. This way, you’ll be ready when they ask to know more!
7. Know that Jesus is the only one who truly understands and loves you fully
We want to be understood by the people in our lives. We want them to recognize that we’re hurting and would like them to comfort us in our pain. It’s a good thing to carry each other’s burdens in that way (Galatians 6:2), but we also can’t expect other people to fully know what we’re going through. Only Jesus fully understands the magnitude of what you’re experiencing and He will fully love you and provide comfort through it (Hebrews 4:15-16).
Please know that you are not alone on your journey with chronic illness. While we may have different conditions and diagnoses, I have been in really rough spots with chronic illness, and I’d be honored to pray for your specific needs. I’d love for you to join our community of hope and get a free copy of my eBook, Finding Hope Through the Fog!