When you battle chronic Lyme disease or any other serious health challenge, maintaining friendships can be difficult. You may find yourself unable to participate in many activities and social events, which makes some relationships difficult, especially “recreational” ones, but perhaps even more challenging is the inability of most people to relate to what you are going through.
I know — I’ve been there. I spent most of my sick years in Colorado — where people are big into recreation, hiking, skiing, biking, and outdoor fun. Throughout most of my thirties, when I was incredibly ill, I painfully stood on the sidelines as friends made plans to spend weekends in the mountains, do day hikes, and attend Sunday picnics in the park— complete with volleyball or some other sport that I could not participate in.
Once in awhile, I would push my body to rise to the occasion and try to be a part of the world around me, but I often found myself forcing a smile, stuffing down the screams of my body, and ultimately, breaking down in tears after I returned from whatever event I happened to be attending — as I realized I was no longer a so-called “normal,” healthy human being.
When Your Family and Friends Don’t Understand Lyme Disease
Even worse though, was trying to explain my limitations to my friends, as some part of me silently begged and pleaded for another to “get it” so that I could be a part of the world. In my early days with Lyme, I believed that if just one person could understand me, perhaps I could be in the world, because such a person would pick me up for dates, take me to health food restaurants, and be cognizant of my energy and the fact that I might need to eat every three hours, or pee every two. Such a person would invite me to sitting events, rather than standing ones. They would offer to come to my side of town for a burger or an at-home movie, and they’d be okay with a twenty-minute walk on the bike trail rather than an hour of rollerblading or bike riding.
Yes, that would have made having friendships and a social life easier. However, as the years passed, I realized that even the most compassionate and understanding of my friends and family members could not “get” what I was going through, and while a few friends kindly obliged from time to time to come over to my apartment for an at-home movie or a burger ‘round the corner, most struggled to join me in my low-key lifestyle.
And what nobody — no matter how well-intentioned — could understand, was how Lyme had powerfully debilitated and devastated my brain, body, and thoughts — my every move, behavior, and literally every single aspect of my life. I didn’t want people’s pity, but I wanted them to understand. Yet the reality was that Lyme had completely changed the plane on which I was able to relate to others, and the plane on which they were able to relate to me. I was now in another world that felt much like a prison and they could only observe me from the other side of the bars. They could never, ever possibly know what it was like to live on the inside.
This can be one of the most incredibly painful things to have to accept when you battle a chronic illness. When you’re sick, you need compassion, friends, love, and support more than ever, yet paradoxically, it is then when those whom you most love seem to vanish. Especially when you battle an “invisible” disease like Lyme with symptoms that don’t always cause massive hair loss, black circles under the eyes, or some other visible manifestation of sickness. We all have a definition for what “sick” looks like, and it usually doesn’t come dressed up in glowing skin, clear eyes, and an apparently strong stature.
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But some people with Lyme disease are ravaged on the inside and yet look like Barbie or Ken on the outside. This leads to them being dismissed by family and friends who just don’t understand why they “look so good” and can manage to get out and about at times, even though they may be hanging on by a thread.
In the end, chronic illness tests the strongest of relationships, and the true friends will stick by, but I’ve found that even the most compassionate and understanding of folks can’t support those with Lyme adequately, because they haven’t been through it themselves, and it’s just one of those tough realities that we all need to accept.
In the meantime, we still need love, support, and compassion, and to be in the world as much as possible. Often though, I have found that it is only other people who have lived through Lyme or another serious chronic illness who truly “get it.” These people will often stand by when the waters get rough, and are able to offer support and love in a way that those who have not endured such hardships, can’t. The downside of such friendships is that it’s easy to get sucked into “symptom talk” with your friends who are going through the same, and before you know it, your life becomes all about Lyme.
For this reason, I believe that having a balance of friendships is necessary for healing and well-being. Having friends who “get it” can help you to process your deepest emotions and struggles, while having friends who aren’t battling disease can help you to focus on other things besides Lyme. Some questions to ask yourself when cultivating the latter kind of friendships might be: What did you love to talk about before Lyme? Can you still talk about these topics with others? What quiet hobbies can you pursue that might involve others? What activity could you get involved in that would give your brain something else to think and talk about? I know that can be hard to do when you’re hurting, but it’s an essential step to recovery.
At the same time, sharing your struggles with others is a necessary part of the healing journey. Sometimes, the pain of Lyme disease is so great that being able to unleash a torrent of tears before God or a loved one provides a release that can enable you to get up and keep going for another day. Paradoxically, grief and pain can be emptied from the body and soul through tears, and when these emotions are processed appropriately and with the right people who understand how to lend an ear, a hug, or a word of encouragement — they can lead to hope and renewed strength. Of course, “venting” can easily cross over into a mindset of victimization and a lifestyle of complaining, if we allow it to, but processing pain in a healthy way leads to freedom.
There have been times when I have not had many close friends in my healing journey. At such times (and even now), God was my confidant, my friend, and my greatest supporter. As I poured out my tears and concerns, God would fill me with His presence, peace and powerful truths to encourage my heart. I would then journal these truths and reflect upon them in my most difficult moments.
Maintaining friendships (and other relationships, for that matter) is not easy when you battle a chronic illness. It can be hard to find others who understand, and who will stand by you, no matter the storm. If this is you, I encourage you to join an online or in-person support group to find like-minded souls with whom to share your journey. Cultivate a relationship with your Creator. At the same time — and as I just mentioned — look for opportunities to engage in a hobby or volunteer activity, even if it’s from home, that will allow you to connect with others on a level beyond Lyme. Seek to give to others in some way, even if you feel that you have very little to give.
Finally, trust and believe that there are people out there who will love you for who you are and where you are at in your healing process. They may not be able to support you in the way that you’d like, but I encourage you to appreciate what they can do, as this will foster gratitude in your heart and is a great strategy for evading bitterness, of which Lyme provides us plenty of opportunity to entertain.
In the end, maintaining friendships when you have Lyme disease, while challenging, is a great lesson in love. When we can learn to love people without expectations, even during our moments of greatest need, then we will have mastered one of life’s greatest lessons. At the same time, it’s important that we recognize our need to be loved by others, and to seek out friends and loved ones who are willing to walk through the storms with us — as we forgivingly let go of those who choose to sit by the sidelines.
This article was first published on ProHealth.com on October 14, 2016 and was updated on February 16, 2021.