5 Things I Wish You Knew About Lyme Disease

If you’ve ever had anyone tell you they have Lyme disease and you’ve answered, “What disease?” you’re not alone. Though this disease is “the most commonly reported vectorborne illness in the United States,” according to the CDC, relatively few people know anything about it or even realize it exists.

On a more personal level, even when you do know about it and in fact have friends who have Lyme disease, it can be difficult to know how to respond or help. I understand that, and to make things easier, here are a few things I wish you knew:

1. Our definition of “OK” might be different from yours.

Most of us people with chronic Lyme disease go into auto-pilot for the question, “How are you feeling?” The answer is, “Fine,” even though we’re far from fine. One reason we might lie is because there is almost never a moment when we feel completely well, but to say so every time gets tiresome, for ourselves and for everyone else. It’s just easier not to go into details, and we know most people don’t want to listen to a list of symptoms anyway.

There’s a commonly held belief that when you’re sick, people will treat you nicely. Often the opposite is true, and we know this. People get uncomfortable. They don’t know how to relate. They get upset and need to be comforted by the sick person. Sometimes they even get nasty and accuse you of being a hypochondriac: You just want attention, you just don’t want to work, you have nothing better to do than lie around. Stop and think about it: If this is the kind of “attention” we get, why would we want it?

The other reason we might say we’re OK is because we’re trying to be OK. For most of us, just being able to survive the day and do the things we have to do without collapsing in the process is a victory. And we actually do tend to have a higher pain tolerance than most people; when it’s a daily reality, you can and do get used to it to some extent.

2. Don’t tell us that if we just think positive, we’ll get better.

People with Lyme disease are well aware of the interplay between physical and emotional well-being. Stress can topple us and land us in bed, even if we’re doing everything “right” regarding our treatment protocol and lifestyle choices. This is because the Lyme bacteria attack the central nervous system and often make a home in the brain and meninges. When we go through stress, our already strained system breaks down.

Things also work the other way around: Not only can emotional stress cause physical collapse, but the infection at work in our nerve centers can cause us to feel negative emotions that are unconnected with our actual emotional experiences. Anyone who has experienced Lyme-induced rage, depression or anxiety attacks knows there is nothing we want more than to be in control of those feelings instead of them controlling us. But unfortunately, there’s not a lot you can do with willpower when your brain won’t cooperate with you because it’s sick.

Nevertheless, it’s not just all in our head. It’s can be everywhere. That pain we feel in our chest and stomach and joints and arms and legs and the soles of our feet and the roots of our hair is real. The infection, the disease, is a real thing, caused by real bacteria, and they will not just all die if we think happy thoughts. Treating for Lyme disease is total war, and if we stop fighting before every single bacterium has been killed, it will come back.

3. If you want to offer solutions, be gentle.

If your tip is basic, chances are we’ve already tried it. For most of us, our goal is to live as normally as possible anyway, so of course we try to eat well, drink plenty, exercise, etc. But it’s not enough just to “lead a healthy lifestyle,” because there is a negative force within us that is destroying every part of us that is keeping us normal.

Maybe you have heard of some effective treatment we haven’t. Do some quick research and try to inform yourself if it would even be viable for Lyme disease. (Lyme is tricky to treat, and a lot of treatments that work for other illnesses might not work for Lyme.) Then, instead of trying to convince us we need it, ask us if we’ve heard of it, and if so, have we tried it and did it work? If we haven’t tried it and you think we should, remember that we are the ones who will have to go through the treatments, and that we may not be enthusiastic to jump right in when so many other attempts have failed. Also, please be sensitive to the fact that we may not be able to afford it.

4. We do want to hang out, we really do.

We know, you invited us and we didn’t come, maybe even after we said we would. That’s because we live in unpredictable bodies that can be fine one moment and debilitated the next. And we feel bad about not coming through; we feel bad because we let you down, and we may even be crying at home because we really wanted to go and now can’t.

Please keep inviting us. Please don’t forget we exist. Please keep us in the loop. And come over! Please come. One of the worst parts of being sick is how lonely it is — the hours you spend staring at the ceiling because you’re too tired to get up, but pain or insomnia is keeping you from the relief of sleep or brain fog won’t let you read.

Remember how in the old days people used to bring flowers and grapes to sick people? That still works! I usually end up eating lots of junk food when I have a bad bout of illness because it’s just too hard to cook — forget about even trying to buy groceries. But even if you don’t bring anything or if you’re just passing by and aren’t sure if you should drop in, do it! You’re who we really want to see. Just having you there means so much.

5. What we need you to do.

We need you to believe us. Lyme disease is notoriously invisible. It might not show up on tests, and most Lyme disease symptoms don’t manifest outwardly. You probably won’t be able to tell from looking at us that we’re sick. But just because you can’t see our pain doesn’t mean it isn’t there. We live in this body, you don’t, so please don’t pretend you know what we feel or don’t feel. Not being believed, especially by the people we’re close to, is by far the hardest part of having this disease.

We need you to be brave with us. Please don’t disappear from our lives because sickness makes you uncomfortable. We have to be brave and fight every day, whether we feel like it or not. You have to make that choice for yourself, and if you stand by us, it will help. Be supportive of our treatment decisions. Just come over and watch a movie with us. Sometimes asking for help or a visit is too hard. We know people have their own busy lives to live, and we don’t want to be a burden. But we really do need and appreciate you.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.