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
  • Hazel Grace Waters

    I was diagnosed with Sarcoidosis earlier this year, and boy oh boy has it been rough! But today reading all of the posts on the site, for the first time in a long time, I feel like I’m not alone! Thank you so much for that

  • D Wade

    I leave on the Island of Bermuda and have had lupus for almost 18 years, 6 of the years in remission. I have recently been experiencing bad flare ups. I am about to get two surgeries. I live each and every day to the fullest which maybe far short of what a healthy person can do in any ordinary day. But I am thankful for life to be able to wake each morning and spend another day with my husband. No I don’t have any children due to lupus but yes I am still thankful for all God’s blessing he is in control of my life.
    Good gave breath of life to all for a reason and I am still breathing, keeping the Faith and most of all giving praise to the most high, AMEN

  • Morgan

    I love this community and site, at age 14 as of this year, my conditions I have dealt with for as long as I can remember (asthma and anxiety disorder) turned into disabilities and I have often found myself crying to myself “why me?” after another sleepless, painful night, I currently take an inhaler and a nasal spray twice a day, 2 pills in the morning and 2 pills at night, however I have recently thrown myself into service dog training which gives me hope 🙂

  • Debbie Peabody

    As a sufferer of MCS and ET, a from of chronic leukemia, so relate to this post!! So wonderful to have a boxful of folks who understand all the issues we face day in and day out while appearing” semi-normal”. Only those who have walked some miles with an illness that uses up spoons so quickly they can never understand! Love to be box friends with you and others!!

  • Mandee Schoolcraft

    Thank you, new “friend in a box”. I forget that I’m not the only crazy person suffering with horrifying, bone jarring, debilitating pain with a smile on my face because not many people get it. I’m just the nutty psychologist (yep, you read that right) who has gained a lot of weight & is just out of shape, but looks so healthy with those rosie cheeks. Maybe if I eat a little healthier, got a good night’s sleep & took a nice long walk every day I would feel better. Or maybe, if I just soaked up some good old Southern California sunshine, I’d feel right as rain. Oh wait, did you say rain is coming?? OMG, that’s at least 3 spoons right there…

    So, can I call you my friend in the “box”? Pretty please? I promise to never doubt how you feel or pretend I didn’t hear you, or to look away when the pain is very, very clearly in your words.

  • Jessica Perez

    This is so inspirational honey. I am 21 years old and was diagnosed at 18. I feel the need to join a support system such as this

  • Connie L Singletary

    Thank you! This is wonderful!

  • Tracie

    How do I become friends in the box yes lost all the others and seems like loosing the people who claim to love me including my children they don’t call anymore no one wants to hear one more time I don’t feel good I have spent 3 years and my savings trying to figure out what is happening 4 months ago was diagnosed with nuerophy of several sorts effects eyes memory feet hands stomach unable to eat solid food without throwing up and keep getting passed to one doctor to another just did first round of 108 blood work testing for autoimmune disorders they know I have one two or three of those now that I’ve lost job last week and insurance was so close to getting answers please steer me how to find these online friends

  • Melissa

    I am sick today and i read this and just started laughing 🙂 thank u for making me feel better 🙂

    ( I also just moved to fayetteville, nc with my husband and son )

  • kellsrg

    I read the piece on spoons, and even though I don’t have lupus I do have a chronic pain problem that is invisible. Sometimes it’s a curse to be so good at hiding it, because when you can’t anymore -and it will happen eventually in all your relationships- it’s hard for anyone to understand pain that they can’t see, that you might not know the exact cause of, that is unpredictable. I read the article on spoons last night and am relieved people get it. I have also thought of my day and my pain (as they are so so so one and the same) in terms of spoons.

  • Tapati McDaniels

    Sometimes a friend has inadvertently said one or more things that were well intended but very hurtful and chronically ill people will withdraw, not having the energy to “process” with the friend. Keep reading and educating yourself about what life looks like from our side of chronic illness and you may come to understand why your friend distanced from you and how to mend it. Some medical centers have support groups for family and friends of chronically ill people so check with the ones in your area. There are online support groups too–search under caregivers or family and friends of people with x…in your case Lupus. Good luck.

  • Hi, I had a friendship over Facebook, some old guy by the sounds of it, dying – he was into ALOT of story-telling about rock n roll history – which was my erm ‘forte’ at the time. So yeah that’s that, then I deleted him, much to my shame – i mean really (felt it was a bit strange ‘cuz i didn’t know him in reality. face to face. But I thought maybe this might mean something)

  • R-stone

    Hi i have just read your article i cried the whole way through
    I was wondering if you can tell me how to join the spoonies
    I feel like you have read my mind for the past god knows how many years ! !
    I would be eternally grateful x x x
    Rachel x x

  • Michelle

     Dear Anon, How very strange, if I had a friend like you I would hold on tight to your friendship. Why doesn’t she want to be friends anymore, has she actually said this to you? How very very sad. I have so called friends and family who I was always there for in their hour of needs, who totally don’t care about me. Today I was in tears again. I just don’t understand people I really don’t. I could do with a good friend and if I had someone in my life like you, I wouldn’t be so sad.

  • 1stladydi

    I would advise that you be patient with your friend as she is going to need your understanding & friendship later on down the road. It could be that she is going through the stages of grief just as one does when they lose a loved one. Be encouraged, I believe that your relationship with your friend will improve and she’ll reconnect as she works through accepting the challenges that comes with her debilitating, chronic illness.

  • I’m really sorry for your “lupus” but you have great spirit buddy your right to do your life with positive action, smile often is great for healing our emotion. Don’t give up.

  • Anon

    Hi, I am on the other side of the spectrum where I had a friend who has Lupus who has now shut me out and no longer wants to be friends. I have always been supportive and understanding and it hurts me deeply that I have now been shut out. I can see that there are community groups for people who are suffering with these diseases but what about the people it affects? I too am going through this but on a different scale of course and am struggling to come to terms that she no longer wants to be friends. We have gone through a lot together including her finding out she had Lupus last year. She is one of my dearest friends and to give up on a friend like this is not in my nature. Any advice is appreciated x

  • I love this site I too suffer with Fibromyalgia, a combo of Lupus and RA, type 2 diabetes, Atrial Fibrillation etc, etc…….and I know all to well about friends in a box, telephone friends but most of all SPOONS.  I thank God everyday I am not alone and that in itself is wonderful.  I love the articles on this site.  If it wasn’t for my cousin sharing the Spoon theory with me I never would have come here.  But here I am I guess I am a lifer 🙂  Oh and I am on permanent disability so I have dealt with trying to work and dealing with disease, believe me it’s no fun.  When your boss says it is time to look for another job or “else” basically.  So glad I am off that roller coaster!

  • Lipotfam

    Stephanie how do you work with the pain? On bad days I’m in bed on end. On better days l can get around my home. And on fantastic days l can drive myself to doctors appointments. I currently take pain and anxiety meds and aloe vera for the ic. Lm experiencing dry mouth and constipation. Feel like I’m vetting ibs because my tummy hurts so often….does anyone have a great solution for pain and or constipation?

  • Chris Job

    Thank you for this…..I have Parkinson Disease along with crippling arthritis ans scoliosis.
    The “good news” is that my blood levels are down now, and do not need to go through any radioactive treatments this January! ( I am a Thyroid Cancer Survivor)
    If only every person could wear our shoes for just a short time, maybe they would have more “patients” when we try to walk or eat with them.
    You are lucky to have a “close friend” to talk to….”the box” is the only friends I have that “take time” to understand.
    Physical challenges are bad enough, but then there’s “emotional” battles also…that come up when the “younger” generation of adults try to “take over”….By this I mean a lot of my family “beliefs” are going by the wayside, because of different beliefs….( I was brought up Christian,but can’t share with my grandchildren the “real meaning of Christmas”…because my daughter-in-law is Jewish and is bringing the children up not “sharing” knowledge of other beliefs…..
    I understand her position and where her head is at, but that doesn’t make it any easier for this Grandmother.

  • spring

    As always when I come to this site when I am having a bad time of it, I know I will come away with better feelings and thoughts, just because someone else , in the box, is there , thinking and feeling the same as I am and we all know how it feels to be finally validated in what we are feeling, thinking and using our “spoons” up. I know that I gain a spoon back when I leave this site, just to know that someone out there does understand and knows what I am going through.

    Friends in a box, I love it!!! You are all mine, even if you don’t know it,

    Spring, stuck in pain and will be for the rest of my life and not having a good day with it.

  • Adrienne Coleman

    Thank you. It is so true. I was diagnosed with SLE in 2008 and Fibro in 2010. I was put on indefinite medical leave by my GP the end of July. My profession is a Pharmacy Technician where I stand for 8 to 12 hour shifts. I felt I was holding on by my fingernails to present to the outside world that everything is okay. But it’s not. I have constant pain in my back and chest pain. My balance is so screwed up that to turn in the shower I will lose my footing. You feel like you’ve had too much to drink (not that I do – have just been put on methotrexate). I don’t enjoy life right nowl. I cry more than I smile. I am undergoing therapy to help me deal with the grief of losing my health. I don’t mean to bring everyone down – but I know that I can share with my Spoonie Friends. That means a lot to me. Thanks. Adrienne