An Invitation

youre-invited

Dearest Chronic Reader,

You are cordially invited to be a member of my Support Network.

RSVP appreciated.

Love,

Nic

Friends, I feel like I have no idea how to create a “Support Network.”

I’m not even sure I know really what a “Support Network” is; its purpose, at least, is self-explanatory: to support.

Support: to bear all or part of the weight of; to hold up.

Well, ok, self-explanatory is in the eye of the beholder…

Because even with a standard Google-definition…what does support really mean? Or at least, what does it mean to me?

Every book I’ve ever read about chronic illness tells me that it is essential to have good support. A Support Network/Team/Person(s) is what will get you through the tough times, will celebrate with you in the good times, etc., etc.

This is all well and good, and, of course, I want one, but how does one actually go about it?

Are formal invitations required? I wasn’t sure, so I included one at the top, just in case.

Is it some unspoken invitation, in which you simply assume that someone is willing to be a “Support Person”? Doesn’t that just end with *someone* making an ass out of u and me?

I have friends. I love them. I feel that they love me.

Does that mean I already have a Support Network, just one that is not aptly named as such? Am I not recognizing them when I really should be throwing a parade in their honor?

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A Just-In-Case Parade

So many questions today, readers.

I have a good medical team now. You’ve met them before; they are the Avengers with some side help from S.H.I.E.L.D. https://iamchronicallywell.com/2014/07/21/avengers-assemble/

However, I’m not going to call my cardiologist to say, “Hey girl, how’s it going?” or ask my rheumatologist to help me with my grocery shopping if I’m having a rough day.

But would I ever even ask *anyone* for help in the first place?

Aha, here we go, the real problem.

I’m a bit of a loner.

Not in the creepy, trench-coat wearing, duffle-bag carrying, shifty eyes-loner sense, but in the sense that I just function mostly in a “lone” state.

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Hi ho Silver!

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Same thing, right?

To be Politically Correct, I’m an introvert.

And, I’m also a little bit of an oddball about asking for help in general.

Example time: When I was in elementary school, sometimes I’d get stuck on a math problem in my homework. My mom would ask if I needed help figuring it out, and even if I’d been sitting there for forever with my worksheet nearly shred from erasing over and over, I would say no. My mom is an accountant. She could have been really helpful with those math problems. Something about asking for help, or even accepting it when offered, felt weird to me, like it meant I couldn’t do it by myself (which, um, I couldn’t, but heaven forbid anyone should know that!).

When you have a chronic illness, and suddenly all or most of your autonomy is forcibly removed by circumstances (or faulty autonomic nervous systems) beyond your control, you need help. In the sweeping, I can barely brush my own hair sort of way.

It’s uncomfortable.

You don’t want it.

You need it.

Icky.

Now though, I’m past all that (*fingers crossed it stays this way for ever and ever and ever*), and I just feel a sort of disconnect.

Sure, I’m sharing <AWholeLotOfStuff> with the Internet, but I’m still pretty guarded. There is <AWholeLotOfStuff> that I am choosing not to share with the Internet.

Not all of it is negative- I’m not having some Meredith Grey dark and twisty meltdown behind closed doors (ok, only on every other Saturday and the 3rd Wednesday of the month- kidding, kidding…maybe).

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Some of it is just neutral, some of it is positive, though I tend to share that part most freely with the Internet.

I feel connected…to my computer screen.

Do I feel connected to other people?

…um

…Not always?

This is a classic case of “It’s not you, it’s me.”

Really, it’s me.

I’m not very trusting (that happens when you are not/mis-diagnosed for 7 long and painful years), I’m not into being vulnerable (that happens when your illness makes you vulnerable, not on your terms), and I feel sometimes like I need to send formal invitations and get RSVPs back to know if people are in my Support Network or not.

So, um, not to be pushy, but are you?

My favorite Chronic Illness book is the Chronic Illness Workbook by Patricia A. Fennell. It’s really a step-by-step How to be a Chronic guide. The way she describes a “supporter” is this:

“These people acknowledge and accept the real life that you live now [emphasis mine]. They understand your limits but don’t consider the fact that you have limitations to be an impediment to intimacy and engagement,” (Fennell, 162).

I like that. I appreciate that. I can think of people who are like that in my life.

Jenni Prokopy over at ChronicBabe.com (whom I adore- check her out!) wrote an article where she describes her Team Jenni: http://archives.chronicbabe.com/articles/16/

“Those folks who are helpful, friendly, enthusiastic? Keep them close. Don’t be afraid of seeking and accepting help, of asking for what you need. Be honest with them, strengthen your relationships with them, and the results will pay off for many years to come. And whenever you can, join someone else’s team too.”

Jenni counts not only friends and family as members of her Team, but also the people she comes in contact with on a regular basis, such as the UPS people and her cleaning lady. She can count on them so she counts them in!

I like that too. I should be counting more people in.

I guess it’s just a weird thing, this notion of a support network. Now we have Facebook and all sorts of social media too, so the idea of “networking” is kind of warped- that sort of instance where you have 900 people on your “friend” list but you only talk to 5 of them in person (and really only like maybe 50 of them in the first place).

Is it ok to only talk about the weather with some people? Does that negate them from being in the Support Network because it’s such a vague and surface level conversation?

I can’t talk about my illness all the time. Its with me all the time, its affecting me all the time, but sometimes I just want to talk about how Olivia Pope really should have stayed on that island with Jake Ballard (#AmIRight?).

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THIS. ALWAYS.

Yet, I don’t always want to talk about Olivia Pope and how she should have stayed on that island with Jake Ballard, either. Sometimes I need to talk about how scary it is trying to plan a full and meaningful life while carrying around this lug called Chronic Illness (#RealLife #ItsHard).

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Horribly, horribly, busy…

As much as my workbooks and kick-a$$ chronic websites are great guideposts, they never say how to actually implement this into your life.

So we’re back to the beginning, Chronic readers- bring it up directly, or vaguely assume that it’s already there and happening?

I can’t deal with vague-ness (is there a word that means vague-ness? I can’t think of one right now) so I’m going to just be direct.

I invite you to be my person(s). Be my Support Network, friends.

I promise to have your back as well, whether you’d like to discuss how Cristina should never have left Grey’s Anatomy or if you need to tell someone how scary it is to make your own life full and meaningful, Chronic Illness lug or not.

I’m responde-ing to vous. (Sorry, for the butchering, francophones.)

Merci beaucoup in advance to those who responde to moi ❤

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11 thoughts on “An Invitation

  1. Breanne says:

    Count me in for sure, friend!! Also, OMG, positing this today in particular was almost creepy because today in particular, I was having this big internal meltdown today about things wayyyyy similar to this. So this really resonates with me. Know that you’ve got me for sure, and I’m always here to lend an ear or do whatever I can!

  2. abodyofhope says:

    Absolutely! In fact, I was really looking forward to connecting with you today through your post. I was really glad to see you had posted something. Here is my email actually: abodyofhope@inbox.com
    That quote is excellent. You mentioned that you might have been a bit negative, but our chronic health facts are our truths and I don’t think that means we are complaining even if the rest of the world might… :-/
    My support network includes many facebook people, in fact, that is really the only reason i go on there is to connect with my chronic friends and private message them at all hours. There are also really excellent support groups of all kinds on facebook. I think Spoonies have overrun the place, lol.
    I love your post on support and who it includes. It’s tru, it can include anyone who you feel brings encouragement to you.
    So glad to get a dose of your writing today! Thank you 🙂

    • iamchronicallywell says:

      I was quite a bit late posting- a lot of going back and forth about how best to put my thoughts into words! I’m so happy that you like the post and thanks for sharing your contact info. I will have to find you on Facebook 🙂 And you’re right- Spoonies are definitely taking over Facebook! Social media was made for us ❤

  3. sarcoidosissoldier says:

    You can count me in too! Although I have the opposite problem…I used to be very outgoing…I was NOT an introvert. My disease makes me one because I am stuck in the house now a lot. I’m grateful to my new blogging friends for support, for distraction and to keep my mind from melting into utter boredom!

  4. Savannah Hardcastle says:

    Holy cannoli! This was EVERYTHING. Loved it and I just totally related…
    Especially about the being an introvert thing.
    I’m reeeeally an introvert but I’m starting to get out again.
    I’m on my phone and I’m having a hard time following blogs on it…I’ll try to find a way.

  5. heckyeshotmess says:

    I just want to say how good of a post this is. Because I honestly can relate to Meredith on many occasions. Too many that probably will scare people. I really don’t get out of the house much and I only talk to certain people about my pain. I learned a lot of people can’t DEAL with my problems which is as simple as my fibro wont let me move today. So I stay away from those people and basically only share good news with them.
    But If you ever want to share a bad painful day with me. I am here. I am a new follower and all but I am nice and I get it a lot.

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