Understanding Lyme Disease

It’s hard enough to understand what others are going through, unless we have walked in their shoes. But, imagine trying to explain your illness, when you don’t completely understand it yourself. Lyme Disease is complicated on its own. But, when it’s chronic…or, long term, it ramps up the complexity of understanding it. A person living with Chronic Lyme Disease often has good days interjected with bad, and it’s not always visible to outsiders. So we thought about it and came up with 8 tips in understanding Lyme Disease patients and what it’s like to be one.

#1 They Are Not Intellectually Lazy

If you know someone with Chronic Lyme Disease, then you might have noticed during conversations that their natural ability to articulate perhaps has diminished at times. Maybe you have noticed they are not able to remember an event or conversation from the past. It’s not only frustrating for you, but it is for them as well. Please don’t jump to the conclusion that they are simply not trying. Some people with Chronic Lyme Disease have the proof in their brain scans, as more and more white matter develops. Not all, but some Lyme patients have infections that pass the blood-brain barrier, causing dementia, epilepsy, myelin degeneration and other degenerative neural conditions. When someones nervous system is under attack it can cause them to behave a lil loopy, but they can’t really control it. Some days, inflammation is low, their minds are clear, and they feel like the luckiest people alive. Talk to Chronic Lyme Disease patients on these and you will get a glimpse of who they can become full-time if and when they find the right treatment protocol in a world where they have very little guidance and answer from the medical community just yet.

#2 It’s Not Them – It’s The Disease

Just like an unexpected breakup, it’s entirely possible that your affected loved one appears to be brushing you off, pulling away from you and all your attempts to get together. Don’t take it personal. Imagine living with an influx of intense pain and a diminished mental state, which is all unpredictable. Imagine how embarrassing it is to stutter because suddenly you are tongue-tied on an hourly basis. When living with this disease, a person is exhausted, both physically and emotionally. It’s a constant battle to understand it themselves. So, it’s unlikely you will either, for a quite a while. But, reading up on it, and their daily struggles, is a good start. Don’t give up on them! They are not breaking up with you. They are struggling with simple things we often take for granted. The most amazing friends are those who feel concern and compassion for us before they feel offense and hostility.

#3 Lyme Is An Invisible Disease

Chronic Lyme Disease is often hard to detect by medical professionals, and nearly impossible to notice from the non-medical population. It’s like watching someone get out of a car who just snagged a handicap parking spot, yet seems to walk away without incident. You have no idea though, if that person is suffering with an invisible disease, such as heart failure. If your friend or family member has Lyme Disease, but appears healthy, be happy for them. Please don’t make them feel guilty, just because they wear it well.

#4 It Might Be Hard For You, Too

There are many ways to help someone who is living with Lyme Disease, such as running errands, hanging out, shopping for them, and more. You might offer to take them out eat. But, you should know that diet is very important to a person living with Lyme Disease. While it’s a kind gesture to offer dinner…and one you still can offer, be aware that they need to stay away from gluten, sugar, dairy, or whatever else they have eliminated. Their dietary choices may not be the best choices, but they are trying them out of desperation to feel better and it is nice to respect other’s discipline. It’s critical that they keep their immune systems healthy and stable, and foods play a role. So, if you want to help with meals, great! But, read up a little on Lyme Disease diets (and ask them) before preheating your oven.

#5 Dropping Out of Life Stinks

I recently met a cop who had to quit his job when he got sick with Lyme. He was a tough and dutiful civil servant who had been through a lot in his career and loved what he did, but after years of trying to keep his job he had to give it up due to his degenerating state. Imagine holding down a traditional job, or cramming for exams, when you can’t even hold a decent conversation on many days…days that you can’t predict. Next, imagine the stress that school and jobs often bring a healthy person who doesn’t also have their mortality on their mind. So, if they leave a job, or school, don’t judge. It might be temporary, and it might not be. But, I would dare bet that they would rather hold down even a monotonous job, than live with Lyme Disease.

#6 They’re In It for the Long Haul, Most Likely

Contrary to what some people believe, Chronic Lyme Disease is not a simple virus that will be gone in a week or two of antibiotics. In best-case-scenarios, it will often take a few weeks of antibiotics before a patient will feel better. However, those are the lucky ones. It often goes misdiagnosed, which leads to delayed treatment, and symptoms increase due to the disease working overtime within their system. Lyme Disease is also known as “the great imitator”, as it mimics so many other illnesses and conditions. The longer it goes undetected, the harder it is to treat. So, it could take years before they repair the physical damage. Patience is tested, for sure. And, not just theirs, but also those around them.

#7 The Mockery of Treatment

Similar to how chemotherapy treatments make a cancer patient feel awful, treatment for Lyme Disease can also wreak havoc on a person’s well-being when endotoxins are released while being treated. It’s called the “herxheimer reaction”, and can occur within just a few days after starting antibiotics. A patient’s symptoms increase, and can lead to extreme discomfort. Herx’s are potential a good sign (and potentially not), because they indicate that treatment is working. But, that’s a tough sell to someone who is physically going through it. Their body goes into overdrive to fend off the sudden flood of extra toxins. Fortunately, the herxheimer reaction is temporary, but still can last at least few weeks.

#8 The Multitude of Moods of Lyme

You might notice that your loved one is a bit more moody than normal. One day might be filled with laughter and smiles. Then, the next, they are withdrawn and emotional. This isn’t unusual with Lyme Disease patients. And, while you might suspect that it’s all due to the emotional stress of being sick, there’s more to it than that. Their body has been biologically altered, with toxins from the disease and from adverse drug reactions running rampant. However, once the toxins are better controlled, the emotional roller-coaster could lessen as well.

Hopefully, the information above will help you in understanding what a Chronic Lyme Disease patient’s daily life is like and give you the power to help in ways you didn’t know were needed or appreciated.

What other ways do we misunderstand Lyme patients and/or their loved ones who try to understand and help?