Find your tribe!

Alternate titles for this post:

I really hate the Twilight series.

~Or~

Mean Girls can happen anywhere.

Support groups for chronic illness sufferers are funny things. Mostly inhabited by women (as chronic illness affects a disproportionate amount of ladies to men), they are meant to be a cozy cocoon of love and warmth, where you can commiserate with others who are experiencing the same crazy symptoms as you.

Many a teenage girl will wax poetic about how her home-bound status is keeping her from the “everyday” teenage life. She will be so totally bummed that she is missing out, most especially on all those social experiences that everyone tells her it is so important to have. She’ll take to her computer, find a group of similarly afflicted, similarly aged girls, and something funny happens.

All those “normal” social experiences she wished for come true, if only in the slightly removed form of being online.

Lucky her, she gets to deal with cliques, mean girls, and the desperate quest to fit in, all from the comfort of her sick bed.

I was 20 when I joined my first support group. I hadn’t even met with the doctor who would diagnose me correctly yet, but I signed up for a online group that promised to be love and hugs for POTSie kids. And it was, until I realized that the majority of the talkative kids in this group were teenage girls all out on medical leave of absence from their high schools or taking a year off before college.

Something funny about girls is that if enough of us are gathered in one place at one time, whether consciously or subconsciously, we start to arrange a hierarchy of sorts. See Tina Fey’s seminal work Mean Girls for more indepth intellectual discussion on this matter.

MV5BMjE1MDQ4MjI1OV5BMl5BanBnXkFtZTcwNzcwODAzMw@@._V1_SX640_SY720_

Chronic girls are really no different from non-Chronic girls. We just take more meds.

Universally, we all want to be liked, we all want to be accepted, we all want to be a part of the hive. We kind of accept the fact that there is a queen bee without realizing what’s happening.

For 20-year-old me in this new support group, I wanted nothing more than to make friends. My high school friends had long since stopped talking to me, and my few true sweet friends were off having their own adventures in college. Where I was supposed to be. Instead, I spent my days Facebook chatting with 17-year-olds.

As I was older, I felt I had to try harder to be accepted. These girls had more in common with each other than they did with me. I’ve always kind of been 30 in my head anyway, so I felt doubly self-conscious. I would do whatever it took to convince everyone I was cool but down-to-earth, up on the latest trends, and yet not too desperate.

I was DESPERATE.

Capital letters mean serious business, people.

Enter the Twilight series.

MV5BMTQ2NzUxMTAxN15BMl5BanBnXkFtZTcwMzEyMTIwMg@@._V1_SX640_SY720_

Stephenie Meyer had just released the last book in the series, and movie number 1 was set to debut any day. I had never heard of the series, and I happen to really not like vampires or anything even slightly related to the horror genre. But everyone was talking about them. And I needed to talk, too.

When I decide something, I am an all-in kind of girl. My mom wheeled me into Costco (#WheelchairDays) and I bought all the books. I read them with one eye closed, not sure if I was cringing more at the gross discussion of what Vampires eat or the obnoxious depiction of a “heroine” (if you could call her that) who really needed to get her butt into a Women’s Studies class, stat.

I didn’t like it.

Oh, but did I talk about it.

Hours on online chat, on the phone, whatever, chat-chat-chatting with sweet doe-eyed girls who thought Robert Pattinson was dreamy and wore t-shirts that extolled their allegiance to #TeamEdward.

I pledged #TeamJacob (whose name I actually just had to google because I couldn’t remember it) if only for the fact that he never led Bella to such anguish that she jumped off cliffs.

I thought that by doing this, pretending to like something I really couldn’t stand, that I was making friends. That, while built on white lies but a whole lot of dedication to a cause, these friendships would last and be real.

Except, there’s always a Mean Girl.

Chronic mean girls are just like non-chronic mean girls in that they feed off attention. In Chronic Girl World, this usually means that this girl will somehow make you believe that she is the sickest, the most worse-off, of you all, so as to always be in need, whether of your Pink Lemonade flavored Gatorade (Right now!) or your agreement that her life sucks most.

I need to take a minute and note that everyone’s chronic experience is different, and I would never, ever, devalue someone else’s chronic journey. However, you know when someone is pushing all limits. You just do.

Mean Girl of this support group didn’t like me. She would talk to me, say nasty things about the other girls, and then when I would try and defend them or rationalize their behavior, she would twist what I said and tell all the other girls distorted versions of what I said. At an in-person weekend gathering of this group, she made me wait for her and one other girl before going into a conference meeting, which made us late, and then only had saved 2 seats (one for her, and one for the other girl), leaving me to sit in the very back by myself as I hadn’t gone in to get a good seat at the start.

You-cant-sit-m8feak

She made fun of my brain fog and insulted my costume for the dress-up dinner, all the while hugging me and telling me how happy she was that we were friends. I later found out that the group of girls I had been talking to so much about that stupid Twilight series had gone to see the movie together and didn’t invite me, even though we had just been talking about it at dinner.

It wasn’t till later in the weekend when Mean Girl threw a plastic beach ball at my head that I had an epiphany.

I am a grown up.

And I do NOT need this shit.

*Nic Note: Sorry for the profanity, but an epiphany is an epiphany.

It may have taken just a little bit longer than I would have liked for this epiphany to occur as chronic illness does tend to slow down your jerk-rejecting reflexes just a bit, but I’m so glad I got there sooner rather than later. I took a giant step back from that support group then, and as it so happened, the group imploded a bit, Mean Girl and her bees left the hive, and at the end of it, the people who actually cared about being supportive in a support group were still around and I started participating again. It is still mostly inhabited by girls younger than me, and while I’m more than happy to be friendly with everyone, I have shifted my focus from trying to be a bee in a hive to being a chronic big sister who pops in for a chat every now and again about what to eat when you realize your digestive system hates most food groups or your skin decides to reject sunlight.

Still, though, I have always longed for a Support Group who actually lives up to their name.

Happily, through the Powers of the Internet and the Magic of the Blogging Community, I was recently invited to join just that.

My new group is made up of a variety of “Spoonies,” chronic people of all walks of life who just want to have a positive support group experience. My support group Mean Girl experience did not occur in a vacuum. Apparently there are a lot of meanies out there, and they aren’t all chronic Vampire-loving teenagers. This new group has rules, which mostly consist of Respect Everyone. Period. We try to find the positive in our life experiences. We celebrate each other and our successes, whatever that means for the day. We are grown-ups and it feels so. flipping. good to have found a tribe. I know that I can be myself, whatever that means, and that this group is going to be ok with it. No more pretending to like stuff that I don’t to try and fit in for me!

And really, darling baby POTSies, Robert Pattison has not been in a successful movie since the Twilight franchise NOT because he has been unfairly typecast as a swoon-worthy undead romantic lead. It’s because he’s not a good actor. He’s just not.

Man, it feels so good to say that out loud!

If you are in a support group that feels less than supportive, there is no need to stay! Chronic connections should make you feel wanted and valued. Don’t let anyone treat you in a way that is less than you deserve. You should never have to change who you are to be accepted, chronic or not. You are a wonderful, beautiful, valid person, Chronic Reader!

Looking for a support group? Start with any national organization for your illness. They might have local chapters or online groups. Facebook can be a wonderful tool, but use caution. Good support groups and support people lift you up, they don’t tear you down. Can’t find one? Be like my lovely friend B and create your own!

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s