Social Retardation – Symptom of Lyme? Or Result?

by Eric Rutulante • July 25th, 2010 • 15 Comments » • Eric's Blog, LymeBites Blog

Slowly, with time, I’m finding myself less and less able to be “okay” in social situations. It’s this damned disease. Those who know me know I love to have a good time. I’m generally the life of the party, and I usually am the one bringing everyone together for this or that. We used to joke I was like Julie from the Love Boat, the cruise social director, for my group of friends.

Then I started getting sick. Before I knew what was going on, I knew my body was shutting down. I blamed it on my job a lot, at the time I was in a traineeship that required crazy hours and unbelievable amounts of stress. Now I realize the Lyme and co-infections were taking over my body.

One of my best friends of all times is here in NY this week (with her 6 beautiful kids). Her mom has a summer home up here in the mountains, and our mom’s are inseperable when she’s up here. I went the other day to spend the afternoon with this friend, and the entire 3 hours I was there all we did was talk about Lyme. I felt so bad after I left that nothing else was talked about. She was asking question after question and I was answering them, it wasn’t as if I was just rambling on and on about Lyme.

I tried to think about that over the past few days, as I’ve found myself in other social situations and realized I’ve become the equivalent of a social retard thanks to Lyme. After being sick this long, my life has revolved around this disease. When I see people, what’s the first thing they ask me about? Lyme. When I meet new people, what’s usually the reason I’m meeting them? Lyme. When I meet new people through old friends, what’s usually the reason we’re introduced? You guessed it, Lyme.

A good post would now go into something deeper explaining this and giving a reason and maybe an answer. So maybe this isn’t a good post. Maybe this is just my platform to complain, that yet one more thing Lyme has taken away from me…my ability to be social. Or at least, social the way I used to be. I miss me. I’m not gonna lie, I can be a LOT of fun. I can make myself laugh so hard I’ve actually forced food to come out my nose. It’s one thing if someone else does that to you, but to make yourself blow food out your nose from laughing? Well that, is a skill.

I have a lot to do today. I don’t have time to wallow in self pity (darn). I don’t have time to ponder the universe, and my place with Lyme in it (good). I don’t have time to go practice being social by being with friends (relief). I have to focus. In the grander scale of things, this is nothing in comparison to everything else going on in my life caused by Lyme. My life is unraveling as if my life were a ball of yarn and Lyme was a crazy kitten. Not being able to be the life of the party pales in comparison to the toll this disease is taking on all the other parts of my life.

I know I’m not alone in feeling this way, we all go through it. I’m nothing “special” because I feel that way today. It is what it is (my most hated expression). But now I’m thinking, why can’t we make what it is, be something different? I guess it’s all in our own hands to do what we can do with this disease. Today, I’m going to find a way to make the expression be “it is not, what it is” or better yet “it is what it is not”.

Join me?

15 Responses to “Social Retardation – Symptom of Lyme? Or Result?”

J says:

July 25, 2010 at 1:43 PM

Thanks for this post. Just what I was bitching about today.
Eric Rutulante says:

July 25, 2010 at 1:51 PM

And your bitching matched what was in my own head, so when I saw your tweets voila! This post was created.
Tam says:

July 25, 2010 at 2:13 PM

This disease alters our life in so many ways–including socially! It consumes us. We try to educate ourselves, understand the politics, take complicated meds–some with food some without food, this med away from that med, etc…–can’t eat ‘normally’, the disease itself invades our minds and alters our mental abilities, our bodies physically become more frail and fragile. So socially we become awkward. I’ve tried not to ’speak’ lyme around ‘normal’ people much anymore because they get just as burned out as we do. It’s hard though, because we feel like we’re fighting to stay alive and they just don’t get it!
julie says:

July 25, 2010 at 3:14 PM

I am glad you posted this. I feel the exact same way. I agree with you and all the comments made from others here. It is funny (not the ha ha kind of funny but the ironic kind of funny) that all I seem to ramble on about these days is Lyme. Before the diagnosis I never would have done this because I had no clue about the reality of lyme disease and I had a LIFE. I feel like it is getting harder to hang on to my personality. But I will not let lyme take away my sense of humor! I hope I can keep laughing through this mess.
Tweets that mention Social Retardation – Symptom of Lyme? Or Result? | LymeBites.com -- Topsy.com says:

July 25, 2010 at 3:42 PM

[...] This post was mentioned on Twitter by Ashley van Tol, Manuela Durson. Manuela Durson said: Social Retardation – Symptom of Lyme? Or Result? | LymeBites.com: After being sick this long, my life has revolved… http://bit.ly/ay2c1G [...]
Tracy Will says:

July 25, 2010 at 6:12 PM

“It is what it is” is my most hated saying too! I hate that freaking saying!!! It reminds me actually of being in a therapist’s office once and pouring out my heart about a very bad time in my life, and that was his response! What a jerk!!! He was saying it along with attaching blame to me for not having an abusive ex arrested sooner. Anyway, that was a HUGE digression.

I missed my class reunion last night because I was too sick to go. But everytime I thought about going, all I could think of was EXACTLY what you said…that Lyme was going to become the central topic and I didn’t want to talk about it at all. It is so hard to avoid, because everyone really wants to make sure they don’t end up like you, so they have a million questions. Then you end up basically giving a class on Lyme Disease 101 when you have FINALLY left your house with GREAT effort to for once, escape the damned disease!!!

It does make one feel defeated and it’s easy to feel like never going anywhere! Even when surrounded by strangers, the inevitable limp that happens when I first get up, the loss of balance, (I refuse to use the walker I am supposed to be using or even a cane), the fact that no matter where the hell I am I am going to have to lay down, be it on a cement bench, floor, or whereever, because I get dizzy and in a lot of pain sitting for long….you end up explaining yourself to someone around you who asks if you are all right.

I have found the only people I can really bear to be around are my Lyme friends. Luckily I have some nearby. We don’t talk about Lyme much, we already know the deal. We know each other’s stories so we don’t have to ask questions. We can just be.

It is all so very isolating. I don’t want people to pity me. I don’t want to be stared at. I don’t want to have to talk about it all the damned time. I don’t want to use a walker, wheelchair, or friggin cane. I end up never leaving home except for a doctor’s appt. I am really still too sick to do much more than that, anyway. I do visit one friend sometimes. I am still in bed the vast majority of the time.

Everything is what it isn’t. It isn’t what it is. It sure as hell isn’t what it’s supposed to be!!!
beth says:

July 25, 2010 at 6:26 PM

eric, if blowing food through your nose is a skill, i’ve got the magic gift. but it has to be carrots or rice, for the most part.

but mine is a gift from lyme. didn’t at all happen until i got very sick. who would have thought that lyme would have brought me such a ridiculous gift?

i love you eric!

note- even when are illness goes unspoken, someone around us is thinking about it…
Renee says:

July 25, 2010 at 6:30 PM

I can relate to this for sure….it feels like if I do not talk about how I amf feeling, what protocol I am now on, the latest news on Lyme..then I have nothing to say..My life is consumed by this awful disease and I am sooooo sooooo sick of it. I am on the search for another passion to bring my life back into some sort of balance….
Renee says:

July 25, 2010 at 6:32 PM

I like to finish the It is what it is quote this way…

“It is what it is, BUT it is not all it can be!”
Victoria Fassett says:

July 25, 2010 at 10:26 PM

I was never the social butterfly but I was social and had friends and did things, traveled, worked took care of friends and dying family members and much more. But after ten plus years with Lyme I am reduced to Social Retard status as well as dreadfully hang my butt glued to my couch. My social life is now via laptop that is becoming too heavy for my painful cripple hands to deal with. The stress of getting ready and out of my house for anything is so overwhelming ands drains me that I am ready to turn back and go home before ever getting to my destination. Having any conversation at this point, finding something to talk about and the words don’t come out and then all the pain screaming, well I can’t even be a good listener it feels like. I do me me and having a life with purpose! I feel beyond “social retard” anymore. I wish I had a few Lyme friends that lived nearby…(not wishing this on anyone though!) the isolation is awful, but you know what they say “No Lyme in California” ….except me haha! Any Lymies out there in S. California? My email is Vfassett@gmail.com
Peace and best health to all
Eric Rutulante says:

July 25, 2010 at 10:41 PM

Victoria….there are many Lymies in Southern California! I can think of 5 off the top of my head. Are you on Facebook? There is an amazing Lyme community there, and many in SoCal. If you’re not let me know, I can try to hook you up with some of them. Email me directly at ericrutulante@lymebites.com
KC says:

July 26, 2010 at 2:49 AM

Yeah I’m frustrated about a few things in this arena. People want to make me feel that I am a social retard…I know good and well that I am not. They want to blame it on my having been homeschooled, as the reason I can’t handle a school campus with 4k+ students. They sees not to recognized that I was educated in conventional schools until 5th grade…and I had a breathing problem the year that I know I got sick with Lyme. I don’t think they really want to face that I have Lyme and that maybe a 20y/i is arguably as sick (though not as frail) as a 70 something y/o. The energy drain of the college building…and the people load of 4k+ students is just like a vortex sucking the life out of me. UGH….I was handling it ok until I relapsed. It was just plain stupid to try college when only half-recovered and setback by a newish tickbite. I know this is a reant. I also got criticized for my strict diet and questioned on EVERYTHING. Then my they would say “well, you are not perfectly healthy.” as if to dissuade and dishearten me in what I am DOING TO BECOME HEALTHY. I guess part of it is that they feel intimidated by my steadfast stand, and the other part is that they don’t know what to make of Lyme. Odd how they criticize almost everything…yet ask your opinion and actually apply the ones that stand out a bit. I don’t get all the dynamics…but I think it means they’re intimidated by a few things about me, yet find my point of view worth following on occasion, which means that I’m not really as crazy as they tell me I am.

I must say, I was herxing HARD last week. That hard herx, and being alone in a house with my 93y/o great grandmother, taking care of her… forced me to reach out at a time when I otherwise would not have needed to in that way. I called the neighbor and asked her to help me out for that bit because I was going through one of my “bad spells.” We had planned for her to come over that day anyway–she just didn’t expect me to be sick. When she got there, I graciously hosted her (puke bucket in hand, just in case I lost it) to the sofa so she could chat with my great grandma, and then I made a b-line for the bed. My great grandma also ended up taking care of me just as much as I was taking care of her on those worst couple of days, for which I’m grateful.

Yeah Lyme does STRANGE things to a social life…but I must say, we still have social skills and God still has kind people on this planet to pitch in where help is needed!
Sheryl Kenney says:

July 26, 2010 at 11:20 AM

I think you’ve done a great job to explain what we all feel. You’ve pretty much described me as well. Seems like all I think about is Lyme and how it’s altered my life and made things so much worse for me and my family. Nothing is the same as it was prior to lyme. I’m on vacation now for 2 weeks, had thoughts of traveling to visit a friend but since I’m getting worse again, I’m not able to travel. And have disappointed my friend in the process. This seems to be a daily practice for me now is to disappoint people around me. They don’t understand what I’m going through. I think it’s tough for someone who doesn’t have lyme to fully understand what we go through. Well… I really just wanted to agree with your post. And I wish you the best of luck.
tiff says:

July 26, 2010 at 9:14 PM

eric/victoria, I am in So Cal… I know several others, too, but no one I communicate with on a regular basis, and no one I’ve met in person. Of course, So Cal encompasses a whole lot of space so we may still be far apart. I am borderline social retard, I think because I am still able to fake it. For awhile, I couldn’t fake it and tried to stay home as much as possible. Now I try to force myself to do normal things when I can and I usually don’t regret it. But it’s hard because I have to pretend to feel great in order to avoid a Lyme conversation. I’m tired of trying to explain it to people who probably don’t want any details anyway. They want a simple answer to ‘what is Lyme?’ ‘what are your symptoms?’ Simple questions without simple answers. It’s really getting to me lately, the alone part. I’m ready to just throw in the towel and wave goodbye to all things Lyme. Maybe I can go back to pretending I’m ok… yeah right.
Great post Eric, one we can all relate to. Kinda eases the lonely retard feeling I have
tiff says:

July 26, 2010 at 9:15 PM

forgot to say, if anyone in So Cal (or anywhere else) wants to connect…
tiffe63@gmail.com