18 January 2014

Lyme Disease & Friendship Hardships

This is a rather personal post that took a lot out of me to write. It's also a long post, so I completely understand if you don't take the time to read it all the way through. If anything, I appreciate you taking the time to read the title so you can at least be aware that Lyme disease creates arduous friction on relationships.

The main reason I share such intimate parts of my life with strangers is because so many others like myself go through the same situations. It is education through anecdotes.

I tell most people I don't ask for pity, but I'll be honest, when I wrote this, I was throwing a bit of a pity party. I think I was entitled to it, though, just as everyone is every now and then.

The main point I want to get across today is that most people without a chronic illness have someone to fall back upon in a time of crisis, when they want to gossip, to go shopping, etc. Or, they can simply go alone somewhere and be independent (oh how I dream of that!). I've struggled with the opposite of this personally, and many stricken with a chronic illness encounter the same relationship battles.

It's hard for most Lymies to get in touch with someone without feeling like a burden, much less when you are bedridden or are close to it. And that goes for a lot of people with chronic illnesses really, not just those with Lyme disease. Having and sustaining friendships is a rough deal. Even if you already have that close friend who doesn't mind sitting in bed with you once in a while chatting, it takes a strong bond to keep that friendship together.

I guess it's usual for most people to lose touch with a chunk of their friends from high school when they go off to college and make new friends. I lost most of my cherished group of high school friends when I became badly ill. Seeing them all go to college, leaving me behind was one of the hardest moments I've ever had to come to terms with.

Because so many of my friends were just unable to keep up with my illness--blatantly telling me so or letting me know by falling to the wayside--you could say I learned who my true friends are. But honestly, I think that's bullshit. I just learned that chronic illness is a hard battle for not just the sufferer, but for everyone around as well. No one wants to truly take care of someone who is sick almost 24/7--especially not when you are 16, 17 years old. I sincerely believe this is one reason why my former relationship with my high school sweetheart abruptly ended, but that's a story for another day--trust me.

ONE of the few friends who stuck beside me tried incredibly hard to understand, but I don't believe she ever really got the gist of it, nor do I think she ever will. That, along with the fact that she, like most people, just wants everyone to be fine and dandy, so they almost take on this idyllic image that I'm doing better than I am, hurts.
It's not that they don't believe me (although some people definitely don't), it's that they wish me to be better so much, that they start believing I'm better even when I'm in so much pain I'm bedridden. Or worse, when they finally do meet up with me in person, I try my hardest to act like I'm feeling better and to participate and laugh and try to have fun because I don't want to be Debbie Downer--I don't want to ruin the party every time because of my illness--so they take it that I'm doing just fine. But in reality, I'm putting on a show just so they'll actually want to hang out with me again.

I can't win. 

People say, "Interaction goes two ways." That's very true. But there's also the fact that most people are able to interact in a form that goes something like, "Hey--haven't talked to you in a while, want to meet up for coffee?" I can't normally do that. My version would be something like, "Hey--I know you are two hours away but want to come to my house anyways and look at Tumblr aimlessly or watch a movie on Netflix? OR maybe you want to drive me to somewhere that is not crowded or hot nor a place where I have to walk far. Oh and by the way if I get sick don't worry about calling 911 I will just have a seizure for like a minute and then I'll just have to go home and rest, it'll be OK." 

I sound fun to be around, right? Like so many others with a chronic illness, it's my anxiety that keeps me at bay from asking people to hang out because, well, it's not an irrational fear of something happening--it's that I know 9 out of 10 times something WILL happen similar to the situation above. I can even have a seizure and no one notice. It's happened plenty of times with the friend I mentioned above, but I didn't say anything. I just went from really happy, energetic, and bouncing around the room excited to the point of crazy, to tired, reserved, and very low-energy to the point where I could barely sit up. 

Friendships both take the energy out of me but also boost my energy. 

Right now, my parents are my best friends. And I'm not ashamed to admit that. 
My dad has always been a best friend to me--we're too much alike to not get along, and even though he's still a huge parent figure, he's not afraid to just kick it easy with me. The only drawback is that he doesn't fully understand the disease, and that's where a lot of our problems come into play. 

Enter my mother.

This dainty, beautiful human being, kind of the opposite of how I see myself--a broad-shouldered tomboyish girl--has always been behind me, always had my back when it came to my illness, and never once said, "Do you think maybe it's just all in your head?"

I had a bit of a crisis the other day and told her, "All of my friends have left me." She is a bit of a sympathetic crier, and I tried so hard not to break down if only for her. But she instilled faith in my few friends for me, and gave me a motherly hug. You cannot tell me a mother's hug and a mother's love is not the best thing for when you have the blues. A mother cures all (but we wish she cured Lyme disease ha!). 

Of course, I have my "Twitter Family," a bit of a support group that's always growing and educating about Lyme. I have made some awesome friends through Twitter who continue to inspire me and keep me going through the tough days. 

But all I really want in life, all I've really ever wanted and never had, is a best friend. 
It wasn't too hard making new friends at college. You didn't have to tell them you were sick, and you didn't necessarily have to go anywhere with them. You could chill with them at dorm rooms, not walk anywhere really, and if you were adventurous, well, there was always the bonfire at night which was just outside my dorm. 

Now, back at home, I face the mess of how to make new friends. How to make friends my age. I'm unemployed, not studying at the moment, and disabled. Sounds like a good OkCupid profile too, btw, doesn't it? 

What gets me is that people will try to say they understand. You might to some extent, but I'm sorry, unless you have a chronic illness, you don't. 

So here I am--all of my former friends are going on to be great things. Gorgeous things. 
And I'm stuck. Stuck in bed. Stuck online. Stuck in this body. 

It hurts. 

I'm trying to better myself, I'm trying to be happy, but 
Happiness is only real when shared  --Christopher McCandless

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