I've always tried so hard to write how my mind works, but it's hard. I always find myself filtering out what I say and how I say it because I'm afraid it won't make sense, I'm afraid people will read it the wrong way. Lyme affects the brain differently, patients with Lyme perceive things differently, worry more, feel anxious, destroyed, but this is how we think. It's hard for those with normal brains (honestly I've had Lyme for so long I don't know what "normal" feels like, but from other Lyme patients, the brain functionality is completely different) to understand what we are thinking and how we feel. I think the purpose of this post is to help me translate the feelings I have and why I have them into terms that can be understood (hopefully). Also to help me work through some of the more dominate thoughts that I have.
After having Lyme & co-infections for 17 years I still have my moments where I question myself. Even after this ever so intense last year constantly running through daily antibiotic IVs, it's just automatically conditioned in my head, because of all those doctors or nay-sayers, that maybe it's not real.
There have been several times when I have turned to my mom and asked her if she was sure I wasn't faking. It's not that I really think I am, I know 100% that I'm not, but I've had so many doctors tell me there is nothing wrong, or that I'm making it up that there's still that fear in the back of my mind that maybe I am. What's even worse is that I constantly feel ignored and alone. Sadly, there's a very select few in my family who actually take the time out of their lives to simply ask how I'm doing, I think the reason being is because they think I'm just striving for their attention. I don't want the attention in a bad way, the only thing I really care about is for people that I've cared about to return the favor and show that they care about me.
Honestly though, I don't think I blame them too much. There is a member of our family who has lied and grasped for attention since being very young. This member of the family has even told the family they were terminally ill. Everyone fell over backwards, including us, and spent time and money to make this person's last months alive fantastic. It was later told to us by this person's father (because of a post I made in regards to some completely different person faking an illness to get attention and how it sickened me) that it was all a lie, another ploy for attention. The family has been fooled once already, so maybe they are just wary to care about someone else. Luckily my situation right now isn't deadly (I do believe back in 2012 if I hadn't gotten help when I did it would have been). Maybe my condition isn't serious enough for them to care? I honestly don't know. I'm smart enough to move past that now, because where they lack in their compassion and love for me, I've gained from my friends and family I do have. I do consider my friends to be part of my family more than most of my family.
What all this boils down to is doubt. Like I said before, there's no question that I'm sick, but no matter what, because of lack of compassion and caring from (whom I thought) were key figures in my life, I will always doubt myself. Typically the doubt is
"maybe it's not that bad as I'm making it". Honestly though, I know that statement is probably one of the most ridiculous things in the world. It
is as bad as it seems, there is nothing that I can physically or mentally do to make everything okay with me, or even slightly better. I work so hard to maintain the disposition and personality that I have, and that is very hard work.
I think some of the times I see people who are obviously much worse off than me and it makes me feel guilty that I'm doing better than them while at the same time feel as bad as I do. For instance, a fellow Lyme survivor, my age (27), who was feeling pretty good, had a seizure at an awareness walk and is now has been completely paralyzed from the neck down for the last 6 months. I hate that she is going through this, but she's strong and I know she will get out of it, but it makes me feel so guilty.
It's honestly very indescribable, I can't think of the proper words I want to use, or even how to describe the feelings I have associated with my doubt.
I truly believe that in order to feel better (rather magnificently or even just a little bit) you have to be positive. Where does positive reinforcements come from? Family and friends who believe in you and give you confidence that they are beside you in your time of need. This confidence will help regulate and remove the doubt in your mind about your illnesses, not just speaking about Lyme here, but any illnesses. I learned recently that the family and friends who actually doubt you (or even lack simple concern) are not worth keeping around. As my parents have told me, there is nothing that we can do to make someone care about you. Either they support you 100% or not at all, when fighting an illness it's all black and white, there's not room for grey.
Sadly, also in the same respect, you can't educate someone that doesn't want to be educated. Lyme Disease is very controversial, there are those out there who can watch us suffer, watch us lose our ability to walk or speak, and still say it's not even a real disease. You can't educate those unwilling to learn. You can always try, but you have to be able to recognize when it is a lost cause. Being sick, we have way too much on our plate to worry about other people who don't care, as harsh as that sounds. But we don't.
In conclusion, I know there are others out there like who have the same feelings, who have been told and treated like what they are going through aren't important. I know that this make you doubt yourself, but you have to understand that these people who don't take the time of day out for you are not worth
your time and effort. Instead of focusing on them and trying to make them care for you, focus on the people who already do care for you. Those who are there for you no matter what, who constantly check in on you, who are there when you need to talk, or just simply there to hold your hand when you need it. These are the people who matter most.
Do take this lesson from me: Chronically ill people do not need to suffer with unnecessary pain or heartache. Eliminate those who cause it, no matter how hard that might be, but in the long run you will be a happier person.
