This is a well written blog from the Travel Journal. A Must Read!
Wednesday, November 26, 2014
A Loved One Has Lyme Disease: What to Expect
It may be a friend, a sibling, a child, even a parent, but if you’re reading this, someone you deeply care for has Lyme Disease and you’re trying to understand what this all means. It’s surely a confusing time for everyone involved. Whether your loved one has been sick for years, or just a short time, your understanding of their situation and unwavering support will be crucial in their recovery. You may not realize it. You may not fully comprehend why someone you thought you knew so well may be behaving differently, but it doesn’t mean their feelings for you have changed or they need you any less. When this is all behind the both of you, your relationship will be much stronger for what you’ve both endured, and for your ability to understand their struggle. But how do you even begin to understand what one is dealing with in terms of this illness? I’ll do my best to help.
Lyme Disease is difficult to deal with, one of the most difficult illnesses someone could be handed in today’s medical society. There’s a good chance that you were happy when you heard your loved one had been diagnosed with Lyme. They likely had some horrific diseases thrown at them as possible diagnoses before this. But be clear, this is not an easy illness. The person you cared about has just embarked on a very difficult journey, one that will take months, maybe even years.
Let’s get this out of the way right now. Lyme is misunderstood by everyone! Friends, family, even the medical community. To say the general knowledge of this illness is limited would be the understatement of the year. Lyme patients often lack the empathy of those closest to them. This disease doesn’t incite the same type of reaction in people as hearing that someone they know has Cancer. You know, the big C word. Cancer is a horrendous disease, one that should have as much resources pumped into defeating it as possible. However, in many cases, Lyme Disease can be just as devastating as a cancer diagnosis. This is not an over exaggeration, this is clearly stating the truth. Please, if anything, acknowledge how scary this is for your loved one. Lyme is also different in everyone’s body, so don’t compare other patients stories with one another. If you know someone that got well in a few weeks, great for them. However, that doesn’t mean that your loved one will have the same outcome. Be aware, that they will be on their own individual path to wellness that will be vastly different from many other patients.
First off, understand that your loved one is not lazy. I can’t state this enough. Their inability to get out of bed isn’t borne out of some type of depression. They are not leaving their bedroom more often than not because they are physically unable to. Lyme can present itself in many different ways, but the one universal symptom is the devastating fatigue. The illness attacks the mitochondria, which helps energize our bodies. When the mitochondria within our cells are damaged, as they are in Lyme, it creates an inability to produce high energy molecules. In those with Lyme, our mitochondria tend to be at about half of their normal capabilities, creating the chronic fatigue. The fatigue robs you of the ability to maintain almost any quality of life. Your mind may tell you to do things, but your body is physically unable to. It’s hard to describe, but it is unlike anything I could’ve ever imagined experiencing. A vibrant, athletic, teenager can be transformed into someone that looks as if they belong in a hospice. The task of walking down the block could take your loved one the same amount of energy as it does for you to run five miles.
Second, your loved one is not crazy. This distinction manifests itself into two different parts, and I’ll touch on them both. The medical community is extremely behind on its knowledge of this illness. It would take me a short book to describe the reasons why, and then it still wouldn’t be enough. Just realize, the research behind Lyme is in its infancy stage. Right now, there is a huge argument taking place within the medical community on whether late stage Lyme even exists (A main factor in why your loved one has a hard time finding a diagnosis). Due to this, those with the illness often feel alienated. They are routinely told they’re healthy, when their clearly not. MS was once deemed the crazy person disease before the MRI was invented that allowed physicians to see lesions in the brain. We are now going through this same type of treatment, and after research catches up with Lyme, I’m sure it’ll happen to patients with another disease. Since we’re told we’re healthy, some will be deemed as mentally ill, when their illness is very much physical. Your loved one isn’t crazy, they have simply been mistreated by those within the medical community.
However, Lyme can effect some cognitively and emotionally. Depression is common due to simply being isolated from the world with this illness, but it does have the ability to alter the chemistry within one’s brain. You may notice that your loved one may start exhibiting some odd behavior or may not be as sharp as they once were. Don’t be alarmed, this is relatively normal, and will dissipate with proper treatment but it won’t happen overnight. Be aware, if their behavior has changed, it truly isn’t their fault. They may become harder to deal with, and may even seem like a different person. It is temporary. If they lash out at you, or do something odd, try not to let it get to you. You may even have to simply ignore these outbursts for awhile. If they seem to be dazed and out of it, don’t make fun of them by pointing out how stupid they seem. This once again, isn’t their fault and it’s best left ignored. Eventually things will return to normal, and you’ll have your loved one back and you may even laugh off some of the odd things that happen. Please, just be patient with them.
Third, your loved one’s feelings haven’t changed for you simply because you no longer hear from them. There are a number of factors why you may lose touch with this person, and it has nothing to do with their affection towards you. For many of us, we have to take a sabbatical from life while we recover, and it’s painful. Sometimes, the painful part is watching those close to you move on with their lives while yours is stuck in neutral. I was always happy when one of my friends accomplished something great, but at times it did become hard to connect and relate when you were in bed all day. Your loved one may be in touch less because they simply don’t know what to talk about anymore, your lives are much different now. Please feel free to share with them your life when you do talk, but don’t list your latest personal achievements extensively, it will create a divide between you two. Also, ask about their illness, but try not to push the questions too hard. They’ll open up when they’re ready. If anything, when communicating, try to laugh and joke about past memories and reassure them that you’ll be doing the same things once they’re better. Also don’t feel shy to leave a simple message that you’re thinking of them. It may not seem like much, but it can really turn a bad day to a good one when someone isn’t feeling well. Lastly, don’t be afraid to contact them a few times in a row if they weren’t the first one to initiate the conversation. You may have to do the heavy lifting in your relationship, and that’s ok for now.
Lastly, we’ll go through the process of treatment for your loved one. Something that you must understand is that this will get worse for them before it gets better. You may hear them mention going through a herxheimer reaction. You’ll probably ask yourself, “What the hell is that?” When we kill the bacteria associated with Lyme Disease or its Co-Infections it releases toxins within our bodies. This toxic build up will have many of us feeling like we have a constant hangover or flu. Unfortunately, there’s not much of a way around it. We simply have to tolerate it and push through. But since the disease is disabling on its own, this can do nothing more but pile onto the misery. After awhile they will start seeing improvements but it will rarely be quick or significant. This is a slow race to wellness that involves a lot of steps. They will be on a host of different medication, sometimes one can be taking up to 100 pills per day! Those pills may also carry along side effects that also have us feeling worse. No lyme patients will get better from the same treatment, we usually get better from trial and error. Our doctors will put us on different meds, see our reactions and continually switch them in and out as if it’s an act of juggling, trying to discern the right protocol. Your loved one is going to hit a wall where progress won’t be made for awhile, hang in there with them. This recovery will not be a straight hike up the mountain, there will be peaks and large valleys they must travel through to reach their desired destination.
If you went into this article thinking this illness would be a breeze, I hope you’re coming out with a very different impression. Love and support will make the recovery process ten times easier, I’d even go as far to say its required for your love one to get well. If you’re able to understand the seriousness of this illness while being there for them through the tears, the smiles, the confusion, you will be part of their treatment protocol to get well, you will be their medicine! I was recently diagnosed with Type 1 Diabetes, if my quality of life was hypothetically at 100, diabetes would take it to 99. Lyme, well Lyme can and has taken it from 100 to 0. Thats the significance of this insidious disease! So go out there, find your loved one, give them a hug, and let them know that you’re there for them!