Living with someone who has Lyme Disease
Lyme disease is a nasty, nasty bug. When not caught early, it can take a person, and completely transform their personality. It's not easy to be a person with Lyme. It is also not easy to be the spouse or caretaker of someone who has Lyme. The person you once knew, the one you thought you married, is gone. Destroyed. Only glimpses of the person he once was are available. Instead, you get an irrational, angry, sometimes suicidal individual. They go through depression, which is common with someone with a chronic illness. But, they also have these bouts of irrational fear, irrational anger, and an irrational need to end it all. It is incredibly painful to watch the person you thought you knew, act in these strange, sometimes psychotic ways. But you have to remember, it's the disease, not the person, that is causing this. But, sometimes, it's difficult to remember that, when you are trying to figure out what you've done wrong when your partner is seemingly upset at you.
If you are someone who is living with someone with Lyme, or any chronic illness, it is absolutely essential for you to take care of yourself. You can't care for that person if you can't care for yourself. You need a network, you need a support group. You cannot become a martyr and do this alone. You will fail.
I speak from experience. I didn't want help. I wanted to be the one who was going to make sure my husband had all the medicine he needed, and got to and from his numerous doctor's appointments. Sure, I accepted help from my family, and friends. But I had lost the one person I could talk to about things that were difficult in my life. My husband. He had always been there, always supported me, and suddenly, I could no longer go to him to talk about my emotions, to tell him how hard this was. I was slowly falling apart emotionally, and I told no one. I had so much to keep me busy, my graduate school, my awesome job that I love, my writing, but running away from my emotional well-being only works for so long. It eventually begins to landslide. I had to reach out. So, I found a Facebook support group for spouses and partners of people with chronic illnesses. I could just write how I felt, without being judged for my thoughts or emotions, because everyone there knew exactly what I was going through. They knew the resentment, the guilt, the hate, the frustration, the love. Their spouses may not all have Lyme disease, but they knew what I was going through. They listened without judgement, and offered words of encouragement, and advice where they could. It helped me feel like I wasn't alone in this anymore. I finally had a place I could go without putting the burden of my emotions on my husband or my family members.
If you are not sure what Lyme disease does to someone's personality, their neurological functions, etc. Google it. Also, look at this links. These links have helped me explain to others exactly what my husband is going through.
https://www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance
http://www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html
And here is a link explaining why this disease is so complicated to treat. It doesn't fit in a perfect little "here take this and call me in the morning" world. And yes, every single thing on that list makes him feel like death has warmed over.
http://www.tiredoflyme.com/11-things-that-can-make-a-person-with-lyme-disease-feel-worse-besides-treatment.html
Most of my friends and family have been incredibly understanding and supportive of us in this journey, but there are so many out there that remain skeptical, or can't possibly believe that it's as bad as we say it is. But believe me, it's worse than we say it is. We don't tell you about the countless nights awake with night terrors, we don't tell you about the debilitating bouts of depression, we don't tell you about the irrational anger and fear. We only tell you that it's a roller coaster ride, and that he's slowly (very slowly) making progress. And it's not just hard for him, it's hard for his whole family.
If you are someone who is living with someone with Lyme, or any chronic illness, it is absolutely essential for you to take care of yourself. You can't care for that person if you can't care for yourself. You need a network, you need a support group. You cannot become a martyr and do this alone. You will fail.
I speak from experience. I didn't want help. I wanted to be the one who was going to make sure my husband had all the medicine he needed, and got to and from his numerous doctor's appointments. Sure, I accepted help from my family, and friends. But I had lost the one person I could talk to about things that were difficult in my life. My husband. He had always been there, always supported me, and suddenly, I could no longer go to him to talk about my emotions, to tell him how hard this was. I was slowly falling apart emotionally, and I told no one. I had so much to keep me busy, my graduate school, my awesome job that I love, my writing, but running away from my emotional well-being only works for so long. It eventually begins to landslide. I had to reach out. So, I found a Facebook support group for spouses and partners of people with chronic illnesses. I could just write how I felt, without being judged for my thoughts or emotions, because everyone there knew exactly what I was going through. They knew the resentment, the guilt, the hate, the frustration, the love. Their spouses may not all have Lyme disease, but they knew what I was going through. They listened without judgement, and offered words of encouragement, and advice where they could. It helped me feel like I wasn't alone in this anymore. I finally had a place I could go without putting the burden of my emotions on my husband or my family members.
If you are not sure what Lyme disease does to someone's personality, their neurological functions, etc. Google it. Also, look at this links. These links have helped me explain to others exactly what my husband is going through.
https://www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance
http://www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html
And here is a link explaining why this disease is so complicated to treat. It doesn't fit in a perfect little "here take this and call me in the morning" world. And yes, every single thing on that list makes him feel like death has warmed over.
http://www.tiredoflyme.com/11-things-that-can-make-a-person-with-lyme-disease-feel-worse-besides-treatment.html
Most of my friends and family have been incredibly understanding and supportive of us in this journey, but there are so many out there that remain skeptical, or can't possibly believe that it's as bad as we say it is. But believe me, it's worse than we say it is. We don't tell you about the countless nights awake with night terrors, we don't tell you about the debilitating bouts of depression, we don't tell you about the irrational anger and fear. We only tell you that it's a roller coaster ride, and that he's slowly (very slowly) making progress. And it's not just hard for him, it's hard for his whole family.
It takes a special person to deal with this like you do.
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