Having a chronic illness and staying caught up on your social life is something that I have on my mind a lot recently. I have finally been cleared to come back up to school here in Rexburg Idaho. I have been trying to come back for over a year and a half! I haven't been to school in 3 years. It has been such a battle to get here, and now I feel so accomplished, and blessed. But it is very hard, harder than I thought it would be.
With that in mind I have spent the last year and a half working on things to help me through these stress filled times. I have been taught, and learned, on my own, tools that could help me with the anxiety, the overload of stress and other issues that I was prepping to face while up here at school. I use grounding techniques. I meditate and do deep breathing exercises. I know my limits mentally, and physically. I have had to swallow my pride and quit at so many things the past 3 years, including a mission, that I feel like I know what I am able/not able to do, so much better. I know when to call it quits. I know when I can push just a little farther and expand my capacity. I know myself really well now from all the work I've put in.
All of this knowledge has been very useful in coming up to school, but there is something that I didn't learn. Not all the counselors, or drugs, or doctors could have prepped me for: I don't know how to have Lyme and be socially normal. All my relationships have changed with people, and how I make those relationships, have changed above all. I've met so many people these past couple weeks and I am struggling to figure out how to be normal with them.
The first example is from meeting acquaintances, people you sit next to in class. It is generally normal to introduce yourself, small talk, ask what their Major is, what semester this is for them etc. But because this is an LDS school more often or not the question comes up in those first few sentences of conversation of "Did you serve a mission?", "Where?" "When?" "Did you do a semester before your mission?" When these questions are asked to me they end up seeing that I did a semester 3 years ago, and have a gap of 18 months since coming home from my mission until this semester started. I can either choose to leave it there. Or I step in and explain that I got sick on my mission and only served a year, and have been recovering from a disease I got on my mission for the past year and a half before I could come back to school. If this was the end of the conversation I would be fine. But then they inquire about what disease I have, and then they want to know what Lyme does, how it works, etc.
It is at this point in a conversation that I am at a loss... Do I just skim the surface? Do I just explain how it effects everyone differently? Or how it effects me? HOW MUCH IS TOO MUCH INFORMATION?! I couldn't figure out why I wanted to give each acquaintance that I met everyday in my classes the whole story. It wasn't until this week that I am starting to learn why.
Before I go onto explain what I learned this week I have another example of how unpracticed I am at social conversations. The day before the semester started I had met all my roommates but one, and when she moved in our first conversation was me telling her the majority of my life story. I was getting ready for bed and she was standing there listen to me relate way too much information for a first-time-meeting-your-roommate-conversation. I regret that conversation now. I wish I could have slapped myself in the face and kept it on a much more basic level. I don't regret meeting my roommate, that's not what I'm saying, I love her so much. I just wish I could do over that conversation, I would have said a lot less about my condition, and my past. But I understand now why I couldn't stop telling her, and all the other people I meet...
I have been home since June 2014, I have been on different treatments for Lyme Disease since September of 2014. Everyone back home knows I have Lyme, they know my struggles, mostly because they saw me going through them, or they heard me talk about them as I was going through them, or they read my blog. I didn't have tons of friends at my disclosure back home because they were all at school, but the ones I did have knew about Lyme already...
I haven't exactly been in a place, until now where I have someone, like my wonderful roommates. Who just wanted to get to know me better. To me, I saw someone who was willing to listen, and ask questions to understand me. And as someone who has been suffering with an invisible chronic illness for so long now, that is one of the greatest gifts someone could ever give me: The desire to understand me. That is so precious, I see it as the greatest act of love someone can give me right now. When someone asks questions about my Lyme I see it as them striving to understand what I'm going through, because I have craved and prayed for someone to understand me, and still do! I want people to get why I'm feeling so bad!
So as my roommate asked more and more questions, I unloaded, and explained more and more. And our conversations about Lyme never really stopped, it wasn't so much Lyme in general, but MY Lyme... I realize now, that I shared too much.
From these experiences, and one more that I'll share, I am now searching desperately for a way to figure out how much to/not say about my disease. The last example that I had was this past weekend, it was the day before the full moon. I was feeling it's effects a couple days early (if you want to know about the moon and it's effects on Lymies click here), and some friends of ours came to our apartment to ask if we wanted to go sledding. If I wasn't sick from the full moon I would have totally been down! But I said I couldn't because I was sick. They asked what I had, I sarcastically answered Lyme Disease. They pushed for more information, so I explained briefly about how the full moon makes me more sick.When I finished the bizarre excuse, as I'm sure it sounded to them, one of our friends backed slowly out of the apartment murmuring apologies and looking at me like I was growing another head.
Again, was that a mistake on my part? Did I share too much? I have now come to the realization that, as it took time for me to be able to talk about everything that had happened to me, it also means that everyone else is going to need time and space to hear it, as well. These are personal experiences that I have dealt with. They have happened to me over an extended period of time, more than most normal people ever have to go through, and I realize now that they are to be shared at a discretion. Just like I can't begin to understand the struggles of a holocaust survivor, one of my fellow classmates should not be expected to understand my struggles as well (SIDE NOTE: I am in no way comparing my struggles to that of the holocaust, I'm just using it as an example).
I understand now that I have to control my urge to want to share everything that has, or currently is happening to me. I have to curb that desire to want to be understood, even though I still crave to have someone who can understand, and converse with me about it on the same level as me, it's not here right now, it might never be. And I also see now, that I can't create someone who understands by dumping everything I've gone through onto my poor roommates, or some guy that just wants to go sledding with me, or to the girl I sat next to in my Humanities class. It doesn't work that way. I can see now that not only is it ridiculous to expect them to understand, but it's also really selfish of me as well.
From these 3 experiences, I see about 2 reactions... The first is something like my third experience. They are a little (or a lot) freaked out, they slowly back out of your apartment, or the next class they make a point to sit on the opposite end of the room from you. The second reaction, that of my roommates (which is where I get the idea of me being selfish in sharing my story and expecting them to understand), is that of a growing sense of helplessness, they want to help, but they have no idea how. They are so sweet and kind, and as I share more and more about my conditions, their desire to help increases, but they can't. So they get this extreme feeling of utter helplessness, that just turns into a fear for me. I don't expect them to help me, that is what the Doctors and Counselors are for, I was just feeling so happy that I'm maybe, possibly, hopefully helping someone understand me, finally... That is where I was being selfish. It is natural of them to want to help. And the more I shared about how I'm feeling was like me expecting them to be my Counselor, I didn't expect that of them directly. But subconsciously it was like I was doing that to them, and they were feeling more and more helpless.
I have since then apologized to my roommates, and I am using a much better discretion on when and where, and whom I share with, as well as how much. I am now trying to take Stephen Covey's advice (shown in the quote above) and try to understand people, because we all want to be understood, in one way or another. I have a hope that as I try to understand others, my desire to be understood will calm down, and I won't feel the need to dump my past onto others. Now, I know that I have no perfect answer to this, it is still just based off of trial and error. Sometimes I think I should just have flyers and when people want to know I can just give them a basic flyer about Lyme. All in all, from these past 4 weeks at school, I have learned tons of stuff! And I think, thus far, I have a better grasp on what is socially acceptable, and what is not, in terms of sharing about my battle with my disease.
-The Lyme Warrior
(If you have any tips or hints as to how you have figured out how much to share about your chronic illness then please leave a comment below, I am not at all an expert at this, and could still use any help in this area.)