My Friends In “The Box”

 

My friends are in a box.  Yep, you read that right….a box.  There are hundreds of them…neatly packaged in an easy to access square.

These people don’t mind when I cancel plans I had with them because I couldn’t keep my eyes open.  They don’t lift an eyebrow when I mummify myself with a pain patch stuck to every visible part of my body, making me look like I could be the main exhibit in an archeological dig.  They are the only ones who have felt the frustration when, yet again, I pull out a handful of hair big enough to craft my own toupee, by just running my fingers through it.  But most importantly, they are the ones who would never, ever, under any circumstances, say the phrase that makes me cringe and shoot fire from my eye sockets….but you don’t look sick.

I was diagnosed with Lupus over 10 years ago.  In those 10 years I have learned the tricks of the trade:  smile often, speak vaguely and cry alone.  Eventually, I got so good at living the tricks that I adapted them as part of my personality. I didn’t look the part, obviously, so why even bother trying to explain it to anyone?  I’ve seen the looks….trust me, I’ve seen all of them….the way they narrow their eyes and shake their head as I bow out of activities early, or leave the party before it even gets started.  I’ve lost more friends than I care to remember because of my illness, and eventually it got so common place that somewhere along the way I stopped caring.

Until I discovered the people “in the box”.

I can’t tell you how many times I have gotten laughed at, heard the snickers behind my back or sat emotionless as my support system was written off as (and I quote) “just a bunch of stalkers”.  I saw them try to cover their condescending smirk with the back of their hand as I had no good answer to their questions of:  what does she look like, where does she live, what’s her last name?  I don’t know those things.  I will never be able to pick them out in a crowded room. But I can tell you that Catherine’s RA tends to flare when the temperature changes, and that Marie is a financial genius but like myself, has the gracefulness of a hippo in a china shop.  I know of Carly’s terrifying fight with her disease for her very life and I know that Ailsa’s weekly dose of methotrexate does her in for a couple of days.  I know these things, yet I have never met most of these amazing ladies.

Know why?  Cause they’re all “in the box”.

These people exist.  They make me laugh, they make me cry and they know just what to say when I don’t.  We are an online community, and while the stigma of “cyber friends” has softened and become more acceptable in the past few years, there are still those who refuse to see online friends as being “real”.  I can try to explain to my long time friend sitting in my house, that the aches in my muscles are intolerable to the point of gnawing my own arm off….but she’ll never know.  My Spoonie family knows…they’ve been there, the pain is real to them and they know sometimes there’s just nothing to say  to make it better.  That kind of inspiration isn’t found in the local playgroup or with friends at a dinner party. There are days when I feel lost.  I cry myself silly and I take a complete nose dive from the podium well meaning loved ones have put me on.  Sometimes I can easily pull myself out of it, dust myself off and steal spoons from neighbors like a flatware kleptomaniac. However, other times I  throw a pity party for one, and upon being asked “what’s wrong”, I will give a laundry list of alphabetized ailments. This tends to be one of those “watch what you ask for, you just may get it” moments where I describe details from the explosion of mouth ulcers that make it look like I’ve been sucking on battery acid for a few days, to the fun game I played the night before of “how many forms of Crisco will it take to remove my rings?”

We are Spoonies.  We’re international.  Sometimes we’re bald and sometimes we walk with a cane.  Sometimes we cry for days and others we can’t stop laughing.  As has been said before, we are members of a secret society of the sick, the price for membership is higher than any healthy person could ever imagine and once you’re in…you’re in for life.

My friends live in a box.  You can call it a computer.  I call it a lifeline.

Article written by staff writer, Stephanie Kennedy.

About Stephanie: I live in Fayetteville, NC with my husband and 3 always hyperactive and occasionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac disease. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
©2019butyoudontlooksick.com
  • Kimberly

    I couldnt finish cause I started crying, will finish a little later! Thank you again

  • lori

    i have fm and cfs, neither of which is considered a disability to the healthy people at the cdc…so it’s easy for me to feel as though i need to forget about me and focus on others. my ‘house’ left the state and i got stuck with someone who googles webmd and mayo clinic while i’m in the office and seems to think i don’t see it. yeah, i’ve already done that at home loser, you’re supposed to know this stuff and want to help me. i feel as though everyone’s blanket answer is that we just need to calm down and talk with someone. yeah, well, i’m trying to talk to you doc and tell you something’s not right and the meds i’m on need to be increased because i can barely walk. there. we talked.

    sorry, it’s been hell since the dr who saved my life left and i owe her everything.

    so, sadie henry, no matter where you are, please know that i am grateful my husband got orders to this awful metropolis they call dc just so i could get assigned to you. thank you for listening when no one else would. thank you for sending me to rhuemo even tho you knew what was wrong all along. thank you for your willingness to try different combos of meds to help me function, even if only for a week…you’re my lifesaver and whomever your patients are now, i sure hope they know they won the lottery with you.

    thanks stephanie for sharing your story and making people understand that just because we’re young doesn’t mean that ‘taking the stairs’ is always an option; rain doesn’t mean cute rain boots, but agonizing pain deep where arthritis meds wont help; taking a vitamin won’t cure us and yes, we are staring at your cane because on a day like today, we’d almost steal it from you…

  • Tiffany I couldn’t have said it better myself! It is amazing how sometimes us “spoonies” keep up with each other, do more for each other, care more about each other… then “real” friends and family.

  • katrina loughlean

    I am so very glad that you wrote this article, and how very true it is. I have met so many nice people on here and if I can ever travel in the near future, I intend to go “hopping” to find some of them. Holly is first, then Nicholina…and a few more. I know what you mean when you say they are “in a box”, but they are also in my heart.

  • Vickie Foster

    Stephanie, What a wonderful article! I am new to the “BUT YOU DON’T LOOK SICK?” site, and it has been a gift every time I open it. I have been so” alone feeling” for years, not that my family and friends are not supportive, they are. I don’t like them to worry, so the mask comes on. There is no mask “IN THE BOX” and I have been starting to connect with other Spoonies. It is so great to be able to have people understand what you go through and to comfort those going through the same type of things. There are no judgments passed here, you will not have to wonder if people really believe you when you feel bad—we always believe you—and that’s a gift!

  • Springdot

    What a beautifully written article and how true! It’s nice to meet someone else with Scleroderma, it’s rarely mentioned on BYDLS, I’ve got the others too, the thyroid thing and the gluten thing(and the vitiligo thing and the after effects of an auto immune inflammation in my spine thing). Real friends are good, too – but it must look wierd to them when one day I can do things and the next day I can’t!

  • Linda

    wow. Thank you, Stephanie.

  • Corrine

    Friends in a box are all I have now. I have Fibro and depression. I’ve also been diagnosed and un-diagnosed (if that’s even a word) and then diagnosed and un-diagnosed again for 6 long years now with Lupus and other things (long sad story).

    My mom, my best friend, passed away 4 years ago. I took it hard, I needed people to hold onto… I looked to those who I thought were friends…. and no one was there. Not even family. It almost seems as though everyone only tolerated me because of mom. I am now alone as far as friends and childhood family go. If it weren’t for my own children and husband I would be 100% alone.

    So yes. I did turn to the computer. I went looking for someone to take my mind off of … well … me, my being sick and depressed…and my now being alone.

    Don’t get me wrong I’ve tried talking to my sister asked her to be my friend/sister again. I’ve asked her to talk with me, to come and visit and hang out, to tell me what I did to make her want to run from me…. she claims she still loves me but wont answer the phone, she wont come over, she wont ask me to go out anymore like she used to (yes I know, we all have told people at many times we don’t feel like it, we’re too tired or too sick… but to stop asking completely? I mean I didn’t ALWAYS say no). She wont even invite me to her house anymore. Every time I talk to her she looks at me like I make her sick, then tries to walk off to talk with someone else. It hurts, it makes me cry just about everyday.

    Then the “friends” I used to have, yeah they are the ones who tell me “oh but you don’t look sick”. The rare occasion I see them (you know after you haven’t seen them in about 5-6 months) they ask in a FAKE caring voice “Oh hi, how have you been?”. Then you have to decided in your head if your going to lie and say “fine”, or tell the truth and say “not well”. Me, I choose “fine” because I know that’s what they want to hear… they don’t want to hear the truth, they don’t want to hear any bad news. So they smile all fake like and say “oh, that’s good” and walk off to talk to someone else.

    Yes all these people (the family and the so called friends) are the same ones who give the dirty looks if they find out you talk to people on the computer. They think your odd/strange because you have to open up to “strangers”. Well you know, if they were any kind of family or friends I would have never had to turn to others for that support, for that sense of belonging. All I feel like is an outcast, some sort of pest when I’m around them. When I leave they seem glad to get rid of me. And no, its not all in my head (as the doctors LOVE to seem to think everything is….including my being sick). You can clearly see it in their faces. Almost a sense of relief.

    I’m so sorry for the massive comment and the complaining. I’ve just been so sad and lonely and this is just right. Friends in a box, they are all I have left.

  • I came to the box for information. What I found was soooo much more valuable. Thanks for the article!

  • Steve Kane

    “…we are members of a secret society of the sick, the price for membership is higher than any healthy person could ever imagine and once you’re in…you’re in for life.”

    Stealing this line. So simply put but so dead on target. Do whatever you can to keep your fingers functioning in case of “abuse” from the healthy. You may not need them to make a fist, but being able to get one up sometimes conveys the message.

  • pris

    great article. i don’t know how i would get by w/o my online support group. i have met a few of them and some twice.
    blessings.

  • Melanie Couch

    You said it!!! Thanks for putting it all into words!! I love my family in the box!!

  • Lil Wilson

    Dear Stephanie, I feel like I know you so well, the way you describe your reactions from other people. I am new to making comments. I just want you to know that I can relate. Also, we are neighbors, I live about 20 miles from you. Write to me on my email, if you feel like it. I would love to have a friend that understands the frustrations we go through.

  • Thank you for writing this! It is so lonely having a chronic illness, and I don’t know what I would have done if I hadn’t found my IIH family.

  • Michelle Zuppke

    I cried reading this! You took the thoughts and feelings right out of my foggy brain and made sense of them. I love my friends in a box! Sometimes, they are all I have.

  • CHRISTINE

    This one made me cry too, love the article, so true, I love my friends “in the box”!!!! Before I had them I had really no-one who truly understood, even though I have several family members with invisible illness, they have not been as big a support system as my friends “in the box”, sad I know, but I am very glad to have those special connections & would not give up one of my friends “in the box” for anything 🙂 Again wonderful article!!

  • Christina

    Having been “blessed” with a rare auto-immune condition (Adult Onset Stills Disease, along with RA, OA & Fibro) 13 yrs ago, I know this all too well. Our “real life” friends abandon us, and we turn to those who can understand us all too well. I also have more “box” friends than “real world” friends…and I wouldn’t change it for all the money in the world! I quickly got tired of having to explain my condition to people (even Doctors who’ve never heard of Stills) & have found so much comfort from my “box” friends. I don’t have to write an essay as to why I just “hurt”… I can’t possibly list what exactly hurts, but simply say ‘everything’, and the “box people” understand. They don’t judge me, but quietly acknowledge my crabby tone, my lackluster mood & my sour stomach due to that wreched weekly methotrexate shot; they know what I feel & I don’t have to explain *why*, and I love that. So, while my “real world” face is plastered with a permanent fake “I’m OK” smile, my spoonies know the real face & they accept it.

  • Fran

    My friends in a box have done more for me than my supposed normal friends !! And most of the time they don’t even realise it !!!

  • Finny

    Oh, all of this is so true. As someone with both chronic pain and autism, the box is my main window to the world, so to speak. Reading and typing is so much easier than talking and listening. Thank you.

  • Squirrely Sue

    The explosion of mouth ulcers! I have that right now. That is one thing to mention about how good it is having your people in the box. You don’t have to use your mouth to talk to them, lessening your pain. Back in my other life I was a computer programmer so I was good with computers, never had to learn how to use the box. And when I got this computer back in 2003, I named it My Lifeline. Who knew what a lifeline it really would become.

    Thank you for writing this article. Finally I am able to explain things to my non-spoonie friends, who also live in the box.

  • Sherrie Nelson

    I LOVE my friends “in the box” too! They are the only ones that understand. They are the ones that make you laugh when you are low, and you cry with them, you nod your head and say – yes, I know!

    Thanks once again for putting into words what runs through our minds all the time!

    Blessings to my Spoonie friends in the box!!!

  • Very well said Stephanie. Words on the screen are the best medecine to stay hopeful, to remember that this flare up will fade sooner of later, that symptoms sometimes disappear as fast as they came, that you shouldn’t borrow on tomorrow’s Spoons…
    « Friends in a box » are special! They don’t care when you have brain fog, they laugh and cry at the same things you do, they support each other, they understand what you are going through because they have been there.
    « Friends in a box » are precious! Espacially those who make possible that other friends gather in such an amazing community and all those who take the time to write articles and those who add their inputs.
    « Friends in a box » are fabulous!

  • Shanann

    Great article! I used to live in Fayetteville. I live in Charlotte now. Are you on Facebook?

  • cherity

    great article i must say i couldnt have said it better!

  • Thu

    What a lovely article! So warming and true. It has already made my somewhat gray day 🙂

  • Anne

    My aunt was just diagnosed, and at her age has additional conditions to deal with. (High BP, diabetes, RA, possible enchepalitis, etc.) I wish she knew how to use the box. I wish I knew when she’d get out of the hospital. Thank you for a reassuring article.

  • ShanKaz

    OMG this had me crying! It is so very true….we may not be able to pick each other out of a crowd, but we connect in a way no one outside of the box will understand! And we cry, laugh, and ache for each other! I am connected to 3 or 4 of these groups and found dear friends in each and every one! Thank you to all who are my friends “in a box”!

  • tina

    This is a wonderful blog! I can so relate as I myself have Lupus and ‘live in the box’. I truly don’t know what I would do without my virtual spoonie family.

  • This is so depictive of how i live each day. God bless

  • Provoke me to tears! Which is a first because usually you make my spleen want to burst from laughter with your tweets.

    I have gotten into heated arguments where people try to tell me online friends aren’t real. Ha! I have lost so called “friends” from said arguments. But I stand strong beside my views on it.

    We ARE FAMILY, and NOTHING not blood, parentage, or bloody internet connection can tell me different!

    by the way in case you didn’t know, I FCUKING love me some YOU!

  • Patty

    Fantastic article! I would be lost without my online family.

  • aimlessaimers

    I love this article & all the comments, too. I would have died years ago if it werent for my spoonie love online, mainly twitter now. I have met people who live a few blocks from me but understand why I’m in too much pain or too tired or sick for a visit and likewise. I now have friends in so many states that if I ever get a remission & can travel I want to visit my friends. Carly, I love you and thanks for showing me this great article. I love my online friends and do not consider any part of our friendship imaginary. That’s where I pour my heart & soul out.

    Love,

    Amy
    autoimmune disease wrangler and multiple cancer struggler/survivor
    @aimlessaimers on twitter

  • bj

    Thanks for writing this! My friends and family that live outside the box, will never know how much I need the box. My friends in the box never tell me that if I would turn my computer off, I might get up and get something done. My friends in the box would never tell me that if I turned the computer off, I might be able to get to sleep. My friends in the box know that the box is my life line.

  • Sherrill

    Thanks for the reminder that support can come from the most unlikely places and the most unusual times.

  • Ailsa

    I couldn’t make it through the flares without my friends in the box. I feel I’ve been neglecting them recently. I’ve been very fortunate in the past month. Actually functioning like a semi-normal person, except those methotrexate days, of course. The Spoon Theory was one of the first things I happened upon a couple of years ago when my family doctor told me that I had a 50% chance of having RA or Lupus. Since then I’ve been “upgraded” to RA, Sjogren’s, Raynaud’s, hypothyroidism, and fibromyalga. Damn, that’s a long list! In the past couple of years I have shared the Spoon Theory with my family and plastered the link all over FB and Twitter. I’ll continue to do so for years to come so other people will meet great friends like Steph.

  • Patsy

    I have friends in that box too, sometimes I wouldn’t make it through my day without them.

  • Thanks, just …thanks.

  • Ruth S

    Most days the only people I talk to live in the box. My husband works 12 hour shifts, so I’m often home alone with my spoonies. The absolute best thing about being a spoonie is the opportunity to find people who understand when I say today was harder than it needed to be.
    I would be lost without my spoonie friends, and I love you all.

  • Tina

    Thank you! Perfect timing, for this article.
    my friends in a box, or spoonies in a box sound just like ME.I was so comforted by that. I also found comfort to find other people in flares when I was.
    It IS nice to have people just “get it”
    even the most well-meaning of “in person” friends expect daily consistancy.
    ‘I don’t have THAT FOR ME/MY LIFE/FAMILY.
    I’m sorry I can’t give it to you.
    Thank you for your site, pg, understanding,
    Love, n hugs.
    spoonie from Iowa

  • Amen, sister!

    I have those friends who’ll never understand that responding to “How are you?” with “I’m OK” is not the same as the days I say “I’m fine”. And then I have those friends who know that asking that question will get them a top-to-toe evaluation, because they *do* really want to know how I am.

    And most of the people who give that much of a damn, are in this magic box.

  • ChrissyW

    As someone who cannot go out at all during the day because of my porphyria causing immense pain and photosensitivity of any direct light from the sun or fluorescent or halogen lamps, I know all too well what a lifeline my people “in the box” are to me.

    I have a husband in Afghanistan, and two toddler boys to raise myself while he’s gone. The only thing I have are people in the box. My world-wide porphyria net groups, my chronicbabes, my spoonie connections. These people are my lifeline, my friends. They understand when I say I’m in an attack. They understand when I disappear for a few weeks and I always have emails checking in on me to see how I’m doing with the kids, reminding me to ask for help if I need it, reminding me that I don’t always have to be alone or always be the strong one. They may just be words on a screen, but they are people who know all too well what kinds of things life can throw at you.

    Thank you so much for writing this!!!

  • Deb Wojo

    Oh my… how I can relate! So very tired of having to get “those looks” from the people I know in real life. At this point in my illness, after 14 diagnosed years, I feel I owe no one an explanation. I feel awful when I have to break plans, but in reality, I have isolated myself from any situation like that with anyone except a few REAL FRIENDS. The people in my box are my salvation monthly, weekly, daily and sometimes hourly. They are such a blessing. They help my husband and my son, as well. Blessing on every one of my friends, whether in the box or out of it. There are just a whole lot more blessings going into the box than not.

  • Pam

    Awesome article and oh so accurate. Hope that someday I too will find my “friends in a box”! Sounds like you have a wonderful support network!

  • CarlyRM

    This is a great article. I love the people I’ve met online! I regularly update my mom with details of how Amy is doing, even though we’ve never met her and she lives in a different state. I can find the answer to nearly anything just by adding #spoonie to my tweets.

    Even before I knew what a spoonie was, I had some of my best friends from the internet. When I was in college and didn’t have energy to go out and meet people, I met people online. Those people are still some of my best friends and I’ve traveled all over to hang out with them!

  • Bree Adams

    Your always an inspiration! A smile and a laugh :). Sending Love from Texas.

  • Clair – nunnybear

    Amazing Steph. I’m so glad I found this site. My kids don’t understand because I guess I really don’t want them to have to. I still want to be Wonderwoman even though they are all grown up and could be helpful and supportive. My colleagues don’t care, my boyfriend kind of gets it but I am high maintenance and I have kids that I care about and he would like it to be just the two of us. He sleeps in my bed while I am on the sofa because I can’t get upstairs any more and that makes me angry. He should do something about it. I don’t try to explain my illness any more, I just make silly excuses. I was drunk and fell over, I was paragliding, My parachute didn’t open. I can’t be bothered, even with the medical profession. I work full time, pace myself, take far too many co co-damols and codeine phosphate and do the best I can do. Thank you all for being here.

  • Erin

    Another exceptional piece of writing, Stephanie!

  • Chris

    Another good article! 🙂
    I have actually, found my emotional/mental, hardened edges, are softening, after spending the last few months reading about what other spoonies are going through.
    I too, have felt so alone & misunderstood, that, I stopped caring what others think. It sometimes, “Steals My Spoons” just trying to explain what I’m going through & how I feel. So, I just don’t try. I Know they won’t understand.
    I’m glad I found this community. (Was by accident, btw) 🙂
    Knowing that I’m “Not Alone,” has done More for me, than I can even explain.
    Thank You ALL spoonies! For sharing your stories! 🙂

  • Courtland

    Another great article Steph. It really puts into perspective what you and so many other people deal with on a daily basis and the support you all get from each other.

  • Carol Burnett

    I love my friends in a box! Indeed, that is where I met Steph and grew to love her before I ever met her face-to-face. I couldn’t do without them! Thanks for putting it into words, Steph!