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
  • Thanks for sharing this. I realized the other day that my true friends besides my BFF have all been made in the box. The fibro, diabetes, CFS and stress over having my Disability rejected the 2nd time (I placed it with a company who specializes in that after my first rejection) is getting to me. TG for the Spoon Theory. It’s the only way people understand my limitations. To add to the Spoon Theory, there’s been times that I have awoken in the morning and found my spoons weren’t delivered overnight so I had to cancel plans and stay in bed. And it’s OK. I know I have a place to come to where my friends in the box live who DO understand. May we all have a good day.

  • I have to confess, i have been neglecting my twitterverse and need to get back to that support group. A lot of times you don’t realize what you have until its gone, so hold on to it for dear life and let the other be the one to let go if need be. Then you know you’ve tried everything to keep that friendship or relationship.

  • Carol

    Thank you. I needed to hear this as a second to my decision to bow out of parties and functions. I cannot work even part-time, so for me, I’m mostly overlooked. When I attend even a regular church service, it’s as though I’m not there to anyone. At least no response other than a hi. Yet, though my close friends’ circle is small, they are wonders with laughter and compassion.Thanks again.

  • Laury

    What a great humorous post!! I love it. Do you mind if I share it at Patients Like Me?, a support group for those with various invisible disabilities and their caregivers?
    I do have a partner who has given me freedom in understanding that I am a shut-in. He recently gave me what we call “the home no-fault rule”. Nothing I do will I be blamed for. So often my body and bones jerk that I knock something over or mess up.

  • Amy D

    Thanks especially to Christine and Stephanie, but also to all dare I say “my” spoonies, or friends in a box! I only have had Celiac (misdiagnosed for 30 years as IBS) since I was about 15, and was diagnosed with RA at about 38 or 39. My PCP says I also “probably” have fibromyalgia as well, and I have degenerative disc disease in my back (herniated disc) and lumbar arthritis that doesn’t permit me to stand for more than an hour or so on a good day.

    In my last FT job I worked twelve hour days w/ the commute and had a second pt job briefly, but (shockingly!) this caused out of control fatigue. Since I now work only about 18-25 hours a week babysitting, I am broke and have no medical but feel better in general, at least I was before the weather got colder….

    Does anyone have any experience with weird bad bruising on their hands, and also burning pain, numbness and swelling (can’t wear rings anymore, at least NOT to bed) of hands all through the night, causing waking? This has been going on for years but I don’t have carpal tunnel….Thanks!!!

    P.S. My big sis recently said the “Can’t u just take an Advil” comment the other day, and has never asked how my RA is….maybe she’s in denial for some reason?

    Amy D.

    Love ya, spoonies!!

  • Magdalene51

    But oh! How I miss our message boards!

  • Thank you for this. I suffer from fibromyalgia, but am currently fighting cancer as well. I don’t know what I’d without my friends in the box. As spoonies when I ‘just’ had fibromyalgia, the support was great, now as I endure chemo they are beyond price.

  • Robby

    This goes along with another article by you, but I am extremely thankful for one special friend I have. A few months ago I reconnected with a guy I was in the 8th grade with. he is also a spoonie, and we try to get together as much as possible, when that dosent happen for obvious reasons, we call, text, of fb msg at least once a day. Anytime one of us is down, the other listens to the other cry, scream and try to stay awake because of the pain pills. Talking to a non-spoonie, about what is upsetting you is one thing, talking to someone who understands is something different.

  • Joanne

    You describe the exact thing I was trying to explain to someone the other day. You said it perfectly. I am not one to post often but I feel close to you all.

  • brillant thanks

  • I just found you–what a delight! The concept of friends in a box is fairly new to me–I was feeling a bit guilty over spending so much time online till I realized how perfect social networks are for a person in my situation. I am a month away from being 78, and am finding my mobility being affected more and more by the RA I’ve had for 54 years, and the RA-caused degenerative spinal diseases. (I also have Celiac, Raynaud’s and Sjogren’s, atrial fib and a pacemaker and have had 3 cancer surgeries–but I’M STILL HERE!)
    My body works better in the evening and night, so I can talk to people all night if I want to, and sleep away the most painful hours! Thank you so much for the spoon theory–it is meaningful to me and to my daughter who has FM, Lupus, and chronic Epstein-Barre, as well as the syndromes I have and mentioned. You are going in my bookmarks this very minute!

  • Beth Worley

    I love this article. I don’t have lupus… I have trigeminal neuralgia, also known as the suicide disease because the medicines don’t work very well, and surgery isn’t always an option, and the nerve pain in our faces can slowly drive us insane, making us finally give in and think that death is better than living with the pain. I am a fighter myself, and try my best to encourage others online with the disease, because I refuse to give in, but limit my activities because so many things can cause me pain. So, my “friends in the box” are VERY important to me! Some days they keep me from going over the edge, and other days I keep them from going over the edge. Thanks for putting my feelings my into words…

  • What a blessing to have found this site! I am a new spoonie, my unofficially diagnosed autoimmune disease is called Still’s Disease, or AOSD and it’s been a long hard road to just get this far. I am so happy to have found such a large group of people that understand limitations that we with invisible diseases/disabilities have to deal with. After almost a year, I should have an actual diagnosis in about two weeks. In the meantime I am desperately trying to make some spoonie friends in a box (or in my case, on a tablet. I have an iPad which I have found the touchscreen keyboard to be a great thing for arthritic hands…worth the money). Anyway, I hope to “meet” some of you on Facebook (Miranda Stein from NY) just put spoon in the request. I hope all of you can make the best of thanksgiving. I will say, I am thankful we have each other.

  • Rochelle Howell

    Wonderful article. I do have many friends in my network online. I don’t have an RL friends thouth.

  • mary

    Thank you for sharing your time & thoughts with all of us.I sometimes just keep it to myself because I feel there is no one listening. Thank you I am a spoonie also

  • Thank you for taking the time to put this down in words. You have captured my thoughts succinctly. I hope today is a good day for you. Gentle hugs.

  • Sacredjinx

    Wonderful. Just wonderful. What hit me most was:

    “secret society of the sick”
    SSOS
    We are Sick, SOS.
    We are Spoonies, SOS

    This is where my brain went from one simple statement by you. Bravo for inspiring a thought process. Thank you.

  • Barbara Ferrell

    Diane, well God bless you and your family sweetheart!! I also have survived incest child molestation. It is a very hard thing to endure I was molested by the person I thought was my father for 7 yrs.! From age 1 (or younger) to age 7. I just had my first baby girl in Jan of this year, she will be 10 months at the end of this one. I have been worried about what happened to you since I got pregnant, I am so sorry to hear about you and your daughter. That just kills me inside, I do NOT understand what goes on in these peoples’ heads…I can’t even fathom what does. Another thing I can’t fathom is going through all that you have, and I only know the tip of the ice burg I am sure. I was diagnosed with FM about 8 months ago. I have been living with it for years though, it is progressively getting worse by the day it seems.
    I have just started to experience the looks and treatment of “not looking sick”. It is terrible how rude people are these days.
    My own mother is having a hard time believing me. I don’t know why…she has watched me suffer for years…but I am sure my complaints fell upon deaf ears!! I would love to be your friend in the box, I don’t know how to add from here…if you are interested, please email me or whatever needs to be done. I think I stumbled upon your reply for a reason.
    God bless you and your family…
    *gentle hugs*

  • Diane

    I find it truly amazing that I can always know that no matter how low I am because of whichever flare I am suffering from today, I can come to BYDLS, read some posts, check-in with familar names, or vent at will. I am always welcome to come here…I don’t have to make an appointment, because we all of us know how unpredictable our health is, so appointment dates are unreliable. Also, by dropping by here, I have saved my significant other at least one vent that he didn’t have to be witness to…not that he minds…but I do. We plan on being around for each other long past the time when all the hair has fallen off my head and started growing out of his ears. This is my safe haven. You are my friends that live in a box…I am the women talking to you from the box…it works! Bright Blessings to All!

  • Diane

    I have had friends in the box since 5 years before the internet launched. My husband & I ran a computer bulletin board system (BBS) for about 5 years, and I hosted a forum for incest and childhood sexual abuse victims. I was a child victim and also lost my daughter to murder by a child molester, so I had a unique viewpoint to share, and I made many close friends through the BBS forum. About 10 years ago my husband & I started playing Everquest. Our first guild was started by a personal friend of 20+ years and together we built a network of friends who lived all over the world. Most of us never met face to face, but we became close friends and my husband & I even renewed our vows with a big wedding in Everquest with friends using their game skills to make and share a wedding cake, wine, mead, and other magical foods. This wedding was more beautiful than our original wedding, and we had far more people in attendance that at the official wedding. I still have screenshots of the ceremony, with a gnome official floating in front of us, all our guests sitting on a grassy hill next to a beautiful waterfall and river. The gnome who was performing the ceremony turned the entire zone into a place with pinky-purple sky, birds singing and wedding bells ringing everywhere in the zone, so hundreds of people knew someone was getting married and they all rejoiced with us. Yes, our friends in the ‘box’ made it all happen and worked for weeks to make food, drink, and magical gifts. My husband became totally disabled about 8 years ago and playing Everquest, and later World of Warcraft, became his way to ‘get out and socialize’. This ‘box’ gives him a portal from which he can escape into another world and socialize with his friends. This site is a lifesaver for me. I’ve been living with Fibromyalgia and chronic daily migraines for 37 years. Of course I wasn’t properly diagnosed until 19 years ago, but I’ve been getting progressively sicker for most of my life. Unless you’ve experienced a chronic invisible condition there is no way to understand what we live with every day. Having a support system that truly understands is a priceless gift, and this ‘box’ makes it all possible. I believe that people get to know each other better through electronic communications than face to face sometimes. Through this medium there are no preconceived notions, no judgment based on what you look like or how old you are, and the anonymity to feel safe enough to really open up and, through only your words, show people who you really are. The friends I have collected in my ‘box’ I have gotten to know from the heart out, sight unseen, and I treasure every one of them. Some people may have doubts about how real friendships like this can develop, but I know for sure that they can and do. I had to give up online gaming after 5 years on Everquest because it hurt too much to spend so much time at the computer, which was necessary for guild raids and quests, as well as mastering skills like cooking, fishing, brewing, etc. I have a myspace page I never update and a Facebook page I don’t have the energy to maintain. I get way behind on email because I just don’t have the energy to keep up with them, but I know that if a friend needs me or I need a friend to talk to, they’re as close as my ‘box’.

  • I love this story for i feel like I live in a box and most of my support comes from people I have met online. For the first time in years I’m not afraid to tell people anymore that I’m sick.
    Thanxs.

  • Rosana Rebuyon

    Love this article. I don’t have lupus, but was recently diagnosed with PBC. I have found comfort and support via Facebook and other online groups for PBC. I am happy to find these “in the box” friends as only 3 family members and 3 close friends know my condition.

  • senualee

    This is one beautiful essay……..

  • i have recently met people online via facbook and friends against lupus, that i have never met, but i love them all. we all have something in common, “the wolf” or lupus. they understand and give me more support than the people who have been in my life a long time. dont get me wrong, my friends and family love me, they just dont understand. “she does not look sick” “maybe she needs to just talk to someone” or my favorite, “honey maybe if you lose some weight you might feel better, and get out more” funny huh? i am so happy to have friends in a box. and now i will have to get me some spoons!

  • Stephanie, you are so on point with this article. It doesn’t matter what your last name is or where you live, we are all trying to live with this disease(s). There are so many of us out there and you and Christine are touching and helping so many people in ways you can’t even imagine
    P.S. I am trying to get some info on Autonomic Dysfunction in relation to Lupus, Sjogren’s and Fibro. Any advice will be helpful. Thanks again. One of your friends in the box.

  • Can absolutely relate to this entire story. Thanks so much for sharing it with us. Very well written. I have also shared it in my own sites. I think it’s a great way to allow others to either understand or know that they too are understood and going through the exact same thing. Thank you, thank you!

  • Ivy

    My eyes are filled with tears and my heart is filled with empathy, compassion and humility…..I am humbled and honored to know you and love you. You’re ability to say in words what so many feel everyday, is astounding. Thank you for sharing this gift with the world Steph.

  • Mary Jo Medosch

    Stephanie:
    Wonderfullly said. I was fortunate to have met both you and your husband at the Lupus event in NC on Sept. 11, 2010. I am CarlyRM’s mom! So I can honestly say that you are beautiful on the inside as well as the outside. Five years ago from that date, Sept 11, Carly was given one hour to live. What a way to celebrate the 5 year anniversary of her not dying by meeting such wonderful and caring people such as yourself. This past Saturday I went to a Healing Mass, prayed for ALL the Spoonies!
    We were asked to pray to the Holy Spirit to give us a word. My word was acceptance! I was thinking of all the people who are sufferring so silently who don’t look sick! How very few people accept their illness. I am so glad that you all have “Friends in a Box”! Love, Mary Jo

  • Mary Jo Medosch

    Stephanie:
    Wonderfullly said. I was fortunate to have met both you and your husband at the Lupus event in NC on Sept. 11, 2010. I am CarlyRM’s mom! So I can honestly say that you are beautiful on the inside as well as the outside. Five years ago from that date, Sept 11, Carly was givien one hour to live. What a way to celebrate the 5 year anniversary of her not dying by meeting such wonderful and caring people such as yourself. This past Saturday I went to a Healing Mass, prayed for ALL the Spoonies!
    We were asked to pray to the Holy Spirit to give us a word. My word was acceptance! I was thinking of all the people who are sufferring so silently who don’t look sick! How very few people accept their illness. I am so glad that you all have “Friends in a Box”! Love, Mary Jo

  • hi, i loved ur article its so true and matches my life. i don’t have lupus but i do suffer with an invisable illness its idiopathic intracranial hypertension. i get terrible headaches, nausea, a annoying whooshing noise in my ear. when things get too much and i end up in hospital yet again, my so called friends don’t understand how a day in my life feels. so yes i turn to my friends in the box (the IH support group) one of many were like i can be the real me and have a moan and not be judged. facebook may be a laugh for other people but too me its a lifeline xx

  • Kerrie

    That was one of the best things that I have heard in the past 2 months! I am a 27 yr. old mother of two and I was diagnosed with SLE in September and Fibro last month…I am definitely a new spoonie and I am terrified of what the future may have to hold for me….but I am trying to hold my head high and live each day as its own and try not to “plan” the next day and just let things happen. It is definitely easier said then done. Your article made me realize that I am not the only one that feels as though most of the time it is easier just to keep quiet and move on, knowing that no matter how you feel or think, there is a group of people out there that knows how your day went without having to ask and who also knows how you feel and when they tell you they are sorry it is because they have felt that pain before and they are really sorry that you are going through it. I love my “in the box” “spoonie” friends that i have made so far. I would not trade a single one of them for anything in the world…not even if I was given the chance to have unlimited spoons for one day….

  • kathy

    Just wonderful

  • Sandy

    Thanks for an article that had me nodding my head and barking out frequent “You Go, Girl”s….I have my facebook friends in groups. One is the spoonies. Lots of days, I skip the family and friends groups & go straight to the spoonies! Funny thing is that, only a spoonie would understand that!

  • Gail Wilder

    I am so grateful for your article and that I just found this site. I was trying to get into IDF Friends and noticed the article was there again. I couldn’t get logged in but it lead me here. For the first time after 10 years of IVIG infusion every 20 days I think my hubby finally understands. The sponn therory made perfect sense to him. I put my going out into the world face on and when I get home exhausted and not able to do much of anything, he was always a little perplexed. You looked just great a few hours ago? I am very isolated so this site certainly is a godsend.

    Thanks again
    Gail
    Age: 60 CVID, Addisons several lungs diseases.

  • Nicole Danielle

    Here here! Too true. There are days (like today, when mother nature has kick me square in the pants after a wonderful week) when I need the support of my fellow spoonies, my own “friends in a box”. Whether it is a note or entry on a forum or a reply to a post I have put up, it is always a comfort for me to know I am not in fact the only spoonie in the world. I want to thank-you for writing this. Truly today, you have made one little spoonie’s day brighter.
    ~Nicole Danielle
    Age:23; DX: FMS, RA

  • Gerri Johnson

    As I read this today I cried…oh, how I related. It’s not lupus I fight, but chiari. This week has been more difficult than it has been for a long time. Thanks to all my “friends in the box”:)

  • Liz

    I couldn’t have sait it better myself. It’s good to have a place where others understand, whereas others pity you or just fall away. Thanks for writing this article. It helps let me know I’m not the only one who has experienced this.

  • I always cry when I read these, especially when it comes to the part about losing hair, of All the symptoms, this one You cant really hide, I can put on make-up for the zombie look, I can cover My bruised arms & legs, but I cant make My hair stop falling out. I feel misunderstood alot of the time, & no one understands the fatigue or pain. I’ve been told I am “too young” for this many problems. The other good one was “can’t u just go take some advil?” LOL. As You said, We understand here. Thank You for sharing such private thoughts, & yes, I have lost Friends also. SPOONIE

  • Judy Bleecker

    This article hit home with me. I was thinking that most of my “friends” are paid to be my friend. (nurses, care takers, helpers, counselors, etc. sad but true)
    Thanks for putting words to my thoughts. Judy

  • Great post, Stephanie, because it is so true. I have chronic daily migraines among other things (lol, yes, the alphabetical list of ailments) I have met great friends through Twitter. It is priceless to have people who understand who we are.

  • Steph

    Hi All!

    I just wanted to thank you all for the nice words about my article. Reading them all has meant so much to me. I consider you ALL my family in the box and look forward to getting to know you individually. Christine and bydls has been my light in a disease of darkness. I thank God for her everyday as I know she was sent to remind us that we’re never alone.

    A few of you have asked about if I have a facebook or twitter account. I do and feel free to add me at either one. On facebook, however just make sure to let me know you’re a Spoonie so I’ll know it’s a request from the box!

    Twitter – Steph_in_NC
    Facebook – Stephanie Welborn Kennedy

    Thanks and Spoonie Love to all…..
    Steph

  • Amen, brothers and sisters! Being able to say how I ACTUALLY feel is a blessing only available here and on other disability forums. I, too, have REAL friends “in the box,” and if one of them misses several days, little red lights go off in my brain and I have to PM her/him to be sure s/he is ok.
    Goodness, this is such a good place to have to retreat to.
    Cheerio!
    Elizabeth

  • Dottie Balin

    Stephanie,
    I have tears in my eyes as I as reading your very true and powerful article. Thank you for sharing this with us “in the box.” I also have Lupus, MS, and many other diseases to numerous to mention. I can relate to your feelings very much. Thanks again.. 🙂

  • Julie Culp

    Beautifully said 🙂

  • Christine

    Stephanie, wonderful piece. I was DX with SLE and RA 25 years ago. I can so relate to this. I am lucky enough to have a YaYa (best friend) that “gets it”. Just know that those of us in the box will always be here. Thank you and my God Bless.

  • Kathy Auen

    Thank you for being one of my friends in “the box”.

  • This is just how I feel. Yesterday my mate stayed home and spent the whole day with me. I asked her if she was happy I stayed home with her, she said oh you had somewhere to go. I told her yes I could of visited with my on line friends. My on-line support group and FB is my life other then that it’s the TV another box. I often wonder what my life would be like with this illness without having a computer. It is a wonderful life line, makes me feel apart of a world.

  • Stephanie,
    Thank you so much for the great article. My seventeen year old daughter was recently diagnosed with Lupus, and it means so much to me to understand more and discern coping strategies to help her. Thank you for the wonderful thoughts!
    Melissa

  • linda

    Thank you for the great article, most of my friends are the ones I me here and on other fibro websites. Thank God/Goddess for people that understand.
    I am fortunate if you want to call it that, to have a sister that also has fibro some days we have long pity partys on the phone. It is so helpful to have at least one person who really understands that is out side the box, even though I treasure all of you in or outside the box.

  • Im crying too . For those I lost because they dont or wont understand, and for those who do and love me just the way I am. It took so long to find them. But they are there!