It’s No Big Deal?

 

Lately I’ve been getting the impression from some of my friends that maybe my growing list of chronic illnesses is no big deal. No one is actually coming out and saying these words, but that is definitely the feeling I’m getting. This point could be debatable. Maybe they think that. Maybe I’m projecting. But this is how they are making me feel, so right now this is my reality.

And it’s fine really. I know that no matter how much education I do or how much awareness I try to bring, I am never going to change what people think. And that’s ok. What is NOT ok is letting those negative nellies turn my own brain against me. With all of this swirling around me right now, I actually started to agree with them yesterday. My brain was actually thinking things like: “ya know, maybe I’m not that sick,” “I haven’t had a bad infection in a while,” I haven’t been hospitalized recently,” “ya know, maybe they are right- maybe all of this isn’t such a big deal after all.”

What a crock. And what’s worse, it was coming from my own head. I felt like I was being brain washed to come over to their side- the not a big deal side. How did this happen? How did I let this happen? Perhaps it’s not a big deal that I take 14 prescription pills per day. Maybe it’s not a big deal that I take shots into my stomach twice a day. Maybe it’s not a big deal that I have to spend one day per month at the hospital for an eight hour infusion for the rest of my life. Maybe they’re right. No big deal.

So after I realized that my own brain was betraying me—adopting the opinions of others, I cried it all out, waved the BS Flag, and gave myself a good talking to. Only I know my history. Only I go to these doctor visits alone and hear the harsh realities. Only I remember all of the infections, hospitalizations, trips by myself to the ER when my husband was traveling for work, the surgeries, the pain, the fear and the isolation. Because no one who’s not a spoonie gets it. They can’t. They have no idea. To them, it really isn’t a big deal.

I know this probably can never happen, but just once I’d like one of these naysayers to spend a month in my shoes. Oh hell, even one day would work. Just one infusion. I’d like them to have to schedule the infusion around work, around vacations, around national holidays- all while making sure they get it in time to not delay the treatment and become sick. I’d like them to have 6 needle sticks by the nurse for the IV since after so many years; their veins’ scar tissue is building up. I’d like them to sit staring at that white wall tethered to an IV pump for eight hours. And maybe their IV will infiltrate. And then I’d like to see them spend that infusion weekend in the bed reacting, on pain killers and anti-reaction meds, oftentimes with migraines and vomiting. Because you know what? I think with one experience of all of that, suddenly they just might realize that having many chronic illnesses is a big damn deal. Maybe for once, they’d finally come over to my side.

But again, I can’t be angry with these people. I cannot control what they think. I cannot control that they many never experience anything like this. So there’s no point in being upset with them. But I really should be upset with myself. I know better. I need to stay true to myself. I need to not let these people affect how I see myself. Even though I don’t look sick, I damn well know that I am sick. I’m never going to forget it again. Because you know what? I’m sick. And it is a big deal. It doesn’t matter who knows it, as long as I know it.

 

Article written by staff writer Kelly Clardy

 

Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimotos, insulin resistance, palindromic arthritis, and a host of other dxs. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and Facebook, Kelly Jaeckle Clardy.

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  • Jen

    ArmyMom Michele, thanks so much for your response! We spoonies have to stick together, right?

    The abusive doc I saw told me that it’s not acceptable for me to do WW online because I need the support. Well, no kidding, Einstein!

    My psychologist wants me to go to OA. Yes my obesity is an obvious issue but for real? He understands the agoraphobia and knows how hard I’m trying, but no, not yet!

    Thanks again.

  • Sue

    Thank you for speaking on behalf of so many of us.

  • Vickie Foster

    Kelly, It is a big deal and I hope they never, ever have to go thur what you go thur! I think it is a small person that doesn’t realize the things you have to deal with every day.Please do not let small people get you upset, count it as a lack of education.Remember stress makes you sicker and who is worth that? We all need someone we can lean on, talk to, or vent to and not all friends can handle that—they are just ” GOOD TIME FRIENDS”. They only want to be around when times are good, not for a forever illness. I am so glad you wrote from your heart and said what most of us think…Prayers and Spoons!

  • I understand what you are saying. I feel the same way. Some people just feel if they don’t see the illness on you then it’s not real. Well our pain is real and I pray that none of them will ever have to deal with what we deal with everyday.

  • Mrs. Brown

    BRAVO!

  • Little

    I do understand what you are going through. Just the other day, I attempted to walk to my car (that I can no longer drive) unassisted and without my walker. I wanted to try and walk! As I was doing this, my neighbor came over. “I see you are doing better!” My reply, “Well just trying.” She said, “Well you are out here walking without your walker, see you can do it!” Yes, I can, on my good days, but it takes all my concentration and strength. I don’t guess she could see that in my eyes. I looked startled at her remark and she just stared at me. I just shook my head in disbelief. Others have no way to understand unless they live the daily life. There is no need to try and explain. That is why I love my support groups on FB and other internet sites. They understand! Thanks for the post; I will certainly pray for you. My thoughts are with you and I do wish for you a cure soon. God Bless!

  • Melisa

    It’s kind of refreshing to hear that I’m not the only one who feels this way! I suffer from depression and anxiety. I also have severe arthritis in my next, was diagnosed with SLE in 2003 and just a few months ago was diagnosed with Fibro. I won’t even mention that in 2009 I was diagnosed with cervical cancer. It seems in the begining everyone seems to care and wants to understand how you feel, but over time it’s just like you said… to them “it’s no big deal”. Well, it may not be a big deal to them but it sure is to the ones who have to suffer every day. I have gotten to the point of hiding my pain and how I truely feel to others because it seems if I complain their atittude about the whole thing gets even worse, so I figure why bother… no one understands or cares anyway. And unfortunately it seems that way with some of the doctors that I have seen. There are so many times that I just want to curl up in a dark corner wishing that God would just let me go. Someone made the comment that sometimes the way others make you feel can almost feel worse than the actually physical pain you are going through. I agree totally with that! Those negative people can make you feel even worse than you already do. Sad to say, but my own husband makes me feel that way quite often. To him, and alot of other people, I am just lazy. If they could only live one day in my shoes maybe they would take a step back and re-evaluate their thinking and opinions. Unfortunately I have no one at all that I can lean on for any support, that is why I am so glad to be able to come on these type of websites. Thank you all for truely understanding!

  • Idaho Susan

    I know that I project the idea that my chronic illness isn’t “a big deal” to most of my friends because they don’t get it and if I’m honest with them they tiptoe around me like I’m breakable china. I want to be treated as normal as possible by my casual friends so I’m only honest with my very best friends and direct family (husband and sons).

  • Judy

    i do SO understand your frustration! i have 1 good friend who gets it. my own family doesn’t get it-they think i’m faking being sick! i get so mad, it drives me to distraction. btw, i have serious fibro, severe osteoarthritis, major depression, bi-polar disorder, am on serious pain management, and the list goes on. but, as long as 1 person gets it, i can cope. sometimes, i go minute by minute, others it’s second by second. GOD bless you for saying how a lot of us feel! GOD bless!

  • jemma

    so glad not to be alone in this situation. i have a friend who has said he doesn’t want to hear anymore about my illnesses because he’s bored of it. HE’S BORED OF IT??!! he has also said it shouldn’t control my life.
    he clearly doesnt understand that it does control my llife and everything i do is depended on my health. its very frustrating and i can’t seem to explain things to him 🙁
    maybe one day he will understand…..?

  • Nona

    Boy can I agree with this post! The last job I had, at the peak of my career, I had an accident and was permanently disabled ever since. I was an athlete before the accident, now I’m in a wheel chair with a host of chronic skeletal, nerve, ligament damage, pain issues and more. Initially, after the accident, I tried to go back to my career (against doctor orders right after 2 major surgeries because I felt judged by some of the emails and messages I received from the people I worked with, some of whom I thought were friends). My very first day back to work, my co-workers and my supervisor had a meeting (without my knowledge) and then proceeded to tell me that my “time off” for surgery was viewed as a “vacation” and if I wanted to “get ahead” or have “the respect of my peers and superiors it was up to ME to change THEIR perception of my disabilities.” Needless to say I was astonished at what I was hearing. I was so angry that people viewed my massive injuries as a vacation!!! As if I just elected to have X number of surgeries, not because I was trying to avoid being in a wheelchair from all the damage done to my body. I never felt so low, depressed, devalued and treated with zero humanity.

  • jan erhart

    I can’t remember how many times I have faced this with both Drs and loved ones… Friends that walk away… Family that get on the ridicule band…

    I have multiple things wrong with me too… Just hit 24 this past week when they added 3 more that cause pain… and they say they can’t do anything for… and the fun thing about it is I am on morphine time released twice a day and percoset 4 times a day and they don’t touch the pain I am still having in it…

    I have used documentation of doctor records to prove my illnesses to my parents… they still think it is just a simple case of over medication… luckily we live 2000 miles apart… and I just call them every day and get mom talking about her garden… and dad talking about his 1957 chevi…

    then I lighten the story to the question how r u… and say “I am doing fairly good.. enough not to complain… complaining don’t do any good any how”… lol…

    To me no one else matters,… my children take care of me and take me to drs most of the time… and so I have their support… and my youngest son just got dx with FM and I told him to talk to his dr about CFS for he is fatigued beyond it… and I have both… now he understands why I was falling asleep standing up… he does the same… only he works and has custody of his 2 and 4 yr old… in Sept it will be 3 and 4… He is the one doing the most around here… my oldest son has symptoms too but not the dx yet…

    It is so wild living with this isn’t it… I didn’t feel how my life changed for I had already been ill with other illnesses and problems for almost 30 yrs when I was dx 2 yrs ago… when I watch my son I see how my life has changed in the past few years… since they think the FM and CFS set in…

    I feel one of those changes now… concentration is going… typing skills suck… memory bad… and fatigue is maxing out… time to try to go to bed… at least time for meds…

    take care all…

  • Trish Howard

    Well written, Kelly! I think the issue is that to MOST of the world, you get sick and then….you get BETTER! They don’t get the concept of ALWAYS being sick, sometimes just having more capacity to hide it than other times. Sometimes it being more visible than other times.

    Continue to follow your own path and keep yourself out of that, as my martial arts instructor and others call it “Stinkin’ thinkin” 🙂

  • Lisa

    It’s called “the arrogance of the healthy”……sigh…..

  • Connie

    I had no idea there were so many out there like me! I see myself in most of these comments! How many of you feel like others lean on and you only have enough strength to care for yourself or them? Quite maddening, I must say !

  • Morgan

    Thank you for writing this. It makes me feel less alone.

    It seems that each of us has bad days, very bad days, and some good days. Because we don’t look sick, people/family/friends don’t or won’t understand what we go through. I can tell them some days its so bad I need a cane to get out of bed, and they just don’t understand. Some days its so bad I just want it all to end, but other people just don’t understand.

    I’ve lost friends, missed so many things, and just hate that I lost my life. I’m supposed to have surgery at the end of the month, but wonder how that will even go.

    The one thing I do know is if and when I get better, there are so many people that I never want to see or talk to again.

    Morgan

  • I actually find I’m the worst at minimising my condition.

    It’s my boyfriend who says, “Wait, if you do that, what will be the long term effects? Have you planned to have your rest? Are you doing the best to take care of yourself here?”

    Me, I just so desperately want to be able to do things just the way I did before I got sick, that I’ll barge in and try it, and then be sick for days afterwards.

  • Tami

    My heart goes out to all you fellow “spoonies!’ I was diagnosed with Fibroymalgia more than ten years ago and finally had to stop working about four years ago because of the pain. It was so hard to get my co-workers to understand how much I was hurting, even though I didn’t ask for special treatment. As much as I would try to explain to people what fibro was, they just didn’t “get” it.
    A year ago I was diagnosed with breast cancer, and successfully treated. I was amazed at how much support I got because people knew so much about that disease. I had people coming out of the woodwork to help. What I tried to tell some of my closest friends and relatives is that cancer is no big deal, but fibro pain is with me 24/7. Maybe it’s awareness of these “invisible” illnesses that we need to help others to understand. They can’t sympathize, or empathize if they don’t know what it is we go through with our illnesses.
    I am amazingly blessed to have a great, supportive and helpful husband of almost nearly 33 years, but it does take an adjustment by others to let go of the “old” us and take us as we are now. For better or for worse, in sickness and in health!
    Gentle hugs <3

  • ArmyMom Michele

    I totally get it, I get the looks from people when I use my parking placard. I don’t need it all the time, so they see me use it some days and not others. They don’t notice how I get out of the car and immediately grab a cart, then hang on to the cart until I’m ready to get back in the car!

    I used to question myself, was it really necessary to take these pills, was it that important that I get a good night sleep? I learned to not try to hide my pain. If someone asks how I am, I tell them! If I am running out of spoons, I speak up! I have fibro friends who have told me that nobody knows they have fibro! I immediately ask them “Why not?” It isn’t like we have done something to be ashamed of!! If someone wants to judge me because I have an illness, shame on them!

    For Jen, I feel for you with the Agoraphobia on top of everything else you are dealing with. I wanted to tell you that I am not a meeting person, I am never sure if I can keep an appointment or not. That is why I joined Weight Watchers Online program. I pay the dues electronically and post all of my food, beverage and exercise info immediately to the website. It really is effective, and on the days I cannot move, I can at least keep track of the points for what I eat and still lose a little weight that way!

  • Krista

    Thank you for posting what I was thinking myself. Sometimes it amazes me that someone out there really does understand. From my staff, co-workers, husband, kids and relatives- no-one thinks it is a big deal. My daughter even said- but Mom you still work, and go to the grandkids football,baseball, t-ball and any other activites and you seem to be fine. I told my daughter that I don’t share my pain and never had, and even though all of those “activities” cause me much pain-they also bring me more happiness than words can describe. I am thankful everyday when i wake up that I can spend another day enjoying my families life and making a difference in the lives of people at work.

  • Barbara

    Boy, can I relate! Sometimes, many times, I just want to be alone so I don’t have to fake it and act like everything is “just fine” I just get so tired. I hate all the medicine I am on, but, can’t do without it.

  • Patrice Howe

    I was just thinking the other day –if someone asked me what-I wouldn’t wish on my worst enemy–it would be one day of nobody believing the illness & the rolling eyes that many friends &family give me/us—because , for me, I find that the doubting people are sometimes worse than the complications of this horrible Lupus!!!!!
    and I was dx’d in 1984—many years of eye-rolling for me!!!!!!

  • Tina

    I do the same thing to myself all to often and it is so sad that we get it from others then turn around and end up doing it to ourselves as well :(… I have often thought the same as you that maybe if they spent a week in my shoes they would see what I go through but I have learned that not even that would work really because in a week they would be ok again… it is kinda like people who get the flu when they get so sick they feel like they are dieing but once it is gone they are right back to life as normal and quickly forget what they just went through and how bad it felt but for us we never forget to forget that we are sick we live it everyday every second of our lives… Wish you all good days ahead and lots of spoons 🙂

  • THANK YOU FOR THIS!!!!!

    I’ve had the exact same problem recently, being minimized by a friend. Reminds me of the Blues Travelers’ song “Run-Around”….

    Oh yeah, it’s not that bad that I have to carry an emergency shot so I don’t die of shock should an accident happen. Yeah… that’s normal…. *rolls eyes*

  • I had so convinced myself that even my doctor’s weren’t really interested in my Sjogren’s, Hashi’s, interstitial cystitis, etc., I quit scheduling appointments. I went to the walk-in clinic when I felt I needed an opinion (other than my own) and had no blood work or any other testing done. A bout of ischemic colitis, last year, took me to the hospital for a 5 day stay – still got my legs and colon! but I now have a 4 year gap in medical records. And I am back to being involved with the medical community without documentation for the kidney insufficiency that has appeared over the last year (after phone calls from the nurse “You’re blood work is just fine!). My doctors don’t get it, why would my friends? Ha Ha, just kidding, I don’t have any friends anymore. I just can’t keep up. I am so far removed from the sphere of their normal lives, not only do they not understand my life – I don’t understand their’s. It is simply a case of mind over matter. If you don’t mind, it doesn’t matter!

  • JoAnn K Delery

    i have been absent from any information or research of my auto-immune residents. i am not even sure how i got here, i was reading about something, saw fibro. mentioned and clicked. i read about “spoonies” and how this woman used an example of spoons to share with her friends the reality of her daily life. that led me here and i read your article. i can’t express enough how thoroughly you expressed so clearly what millions of us live with daily! a thank you is simply not enough, but i am so thankful you did share this heartfelt story. i’ll be 61 in about 5 days, been dealing with the adjustments of my daily doings with every decade that has passed since i was 36. it did take doctors another 8 years to finally get a diagnosis – rheumatoid arthritis & fms. In ’85 i had been diagnosed with Graves Disease, totally nieve (don’t know to spell that word, sorry) how that would affect my life in the years to come! i have a handle on all of this now, learned my limitations, cheat often then spend time in bed. now it’s worth it, when it comes to spending time with my grandchildren. i work barely 60 hrs a month which is sometimes 60 hrs. too many, but again, i can sleep when i get home. i guess it boils down to i have no children or husband to take care of on a daily basis, i’ve made it through those years. i have an awesome relationship with all my kids. it has made me thankful for each day i wake up, can get out of bed and do some work. blessings to all of you. no preaching here, but without Jesus Christ in my life, i would not have joy in my life. joy has nothing to do with happiness, that is as fleeting and hopeless as counting on a good day today or tomorrow. but it’s enough.

  • Susan

    I totally understand what you are going through. I have had the same kinds of problems with friends and even close family members. While I’m not defending anyone, what I do realize is that healthy people cannot comprehend what we are going through, because what we go through is not within their realms of experience… they have never been that sick, or their sickness was temporary and easily forgotten when their health returned. How many doctors have we had that have absolutely no clue? Tell you you should walk and exercise more and not sleep so much? I have helped the situation between us by describing the types of things that are wrong with me, and helping them relate by comparisons of things that have happened to them, that they have experienced. “Remember the last time you had the flu, how you said you had a splitting headache, every bone and muscle in your body hurt, and you felt like you weighed a million pounds and couldn’t get out of bed? Well, I feel like that when I wake up in the morning.” I’ve also given them literature on SLE etc., so they understand that what I say is not an effort to get attention, that the symptoms are real. Friends also misunderstand silence… “You know, I’m just not feeling up to it today”, sounds a lot like you’re brushing your friend off, and that friend gets resentful, forgetting that when you say that, you’re not just being lazy, you’re serious. Sometimes a lack of “complaining” works against you. Although you might have told your friends your health issues, you do have to occassionally remind them… they easily forget after seeing you when you are well, if they have ever seen you sick at all… funny how they don’t come visit when you tell them you are really doing poorly. People don’t know what to say, how to feel, or what to do. They are afraid. I think a lot of times they feel helpless and frustrated because they are incapable of changing the situation. They care about you, but are also terrified and don’t know how to communicate it. AND… some people are just insensitive. They don’t want to understand, because then they’d have to care. You definitely find out who your true friends are. I, for one, don’t have the energy to put up with the rest…

  • Jen

    As everyone else has said, thank you! I, too, start to believe “them” when I hear things like “if you can do ‘x’ why can’t you do ‘z’? (which is usually something THEY believe I should be doing). I think “self,” why can’t you do ‘z’ – I mean I DO do ‘x’ so maybe that person is right.

    I have lost friends over my invisible illnesses to the point where I am down to basically only my online friends and one person who calls sometimes but we can never meet-up.

    People get tired of hearing me say that I can’t do something because I’m in too much pain or I’m too tired… or whatever! They don’t seem to think of anything being “chronic.” Sure, early on they’ll be sweet and kind, but when it goes on and on – see ya.

    I have a placard to park in the handicap space. When I get out of the car I can get some pretty nasty looks because, you guessed it, I don’t look sick. How could someone my age possibly need that?

    I have also heard “you’re so lucky not having to work.” My life is not what I consider any form of “luck.” I always say that I’d much rather be working! I mean, really? I don’t wish all of this upon anyone, but I agree – spend an hour or a day living my life and they’ll go back to theirs. Grass isn’t always greener in someone else’s life. I get told that other people have problems, too. Do they not think I know that?

    One of my illnesses is agoraphobia so leaving the house is a terror I can’t put into words. This is absolutely misunderstood! I’ve been told that I need to lose weight – as if I don’t know that myself. I lost 75 lbs a few years back. Then the agoraphobia hits and I can’t get to the gym anymore, so I gain in back.

    I saw a doctor last week – pain mgmt (surprise) and he won’t treat me unless I join Weight Watchers. When I told him how difficult that is because of the agoraphobia, his exact words were “get over it.” I’m working my hardest to go places, but I’m starting with mainly familiar places and anyplace holding these mtgs is not familiar, making it more scary. I know how to lose weight – I did it before. His response was “and what happened?” Yes, I gained it back because I couldn’t get to the gym. Well, evidently if I’m fat, my pain isn’t real – it will go away if I lose weight. Hello – did he look at the list of medications I take?

    This doctor asked if anyone has told me that my pain is in my head. Well yes, in the beginning before I was diagnosed… again, it must be because of the strain on my body with my weight! He said that those people were right. I was told that fibro is all in your head. It’s messages from the brain telling you that you have pain in places where there isn’t actually pain. Well, I don’t care about the biology/chemistry of it – I’M STILL IN PAIN!

    Sorry to ramble about that, but it is another example of someone (in the medical profession who has to see fibro patients on a regular basis) being ignorant. Sure fibro won’t show up on a blood test or any scans, but the pain is still real! I also have arthritis and that DOES show up on an x-ray. No, my pain isn’t all in my head – even if his “theory” is right.

    Ok, Jen – remind yourself that all of your diagnoses are REAL and they ARE a BIG DEAL! I’m so glad you wrote this and I really needed to hear it right now after the abuse and attack at the doc’s office. Rest assured, I am not returning there!

    Now, if I could just find some friends….. I am so thankful for my spoonie friends 🙂

  • I really appreciate this article. My husband is the picture of health. In fact, he gets a headache once a year if he is unlucky and it lasts an hour or two.

    It is very hard for him to understand the concept of pain. He tries. I will give him that. When he calls me from work he asks how I am feeling and then proceeds to go through the same sing-song suggestions: Maybe if you find a better doctor…or if you get more rest…or I heard of another medicine…or I wish you could feel like you used to…or…blah blah blah…

    He means well, but it is the same thing everyday. I live in an area far away from specialists. We barely have a hospital. The doctor that I have admits that he doesn’t know anything about fibro. He just goes by the charts from my deceased doctor who diagnosed me. I just take the meds and don’t go to see him.

    Is it typical that doctors don’t even touch patients anymore? The last ones I have had just sit across from you and ask you where you hurt. I have done what the writer of this article has done and tried to think that maybe it isn’t a big deal. I do admit that many of the afflictions that are embodied in this group are so much worse than mine. I am very thankful for this site.

  • Beautiful article =] I’ve fallen into this trap many times, too. I have Ehlers-Danlos Syndrome (Hypermobility with Classical features), Postural Orthostatic Tachycardia Syndrome, Fibromyalgia (although my rheumy treats that as part of the EDS) and Delayed Sleep Phase Syndrome. But I look great! ;P Lol.

    My amazing, absolute godsend of a boyfriend (Hesh) is away on a 3-month adventure around south-east asia and being surrounded by “nay-sayers” and people who mean well, but really don’t get it…WOW, does it ever make me appreciate him more! Lol <3 We've been together four and a half years, so he knows me better than anyone and he has a really in-depth understanding of my health crap. He can kind of bridge the gap between me and the nay-sayers, because coming from him, for some reason it's all a little more believable, lol.

    But I'm not letting it get to me, while he's away =] I just have to keep reminding myself to ask: What would Hesh say? ^_^ <3

  • Andrea

    You’re not alone, Dear Friend……

  • Cynthia D

    I have mutiple chemical/auto immune. From day to day I never know how much energy I will have. If I feel like rolling the dice
    on days I feel I can go out, then I must realize that any person or store environment can set me off in a matter of minutes. Most of my family that lives near me tries to have their person fragrant free. But when your are this severe every single product that is put on the body/hair, will trigger me. Every chemical they clean their house with start to shut my lungs down. That is what I can’t get across to them!
    I have had times that I try to push myself “to be better” “tough it up” just to spend time with people and not just stay in my house, alone. But the reality of my illness has become crystal clear as the government can’t get it together and we are looking at the funds running out on disability.
    Since my health is compromised, I can’t seem to move away from the fear that faces all people that are in these shoes.

    Thank you and blessings,

  • Joan

    LOL Kelly I just had a huge reply as I know exactly what your going through. And I hit the wrong key and deleted everything I wrote. I will re post but not right now. 🙂 Hugs xx

  • John Egan

    “BALANCE” a swift look in the dictionary found no fewer than 8 different uses of the word “balance” before I stopped counting
    It can be used as a third person singular verb (?)
    mental health; a state in which opposing forces harmonize
    mental equilibrium
    mental health, a state of remaining clear headed and unperturbed
    accounting; a list of debits on one side and credits on the other
    art: harmony between different colours and sounds
    watchmaking; a device to regulate the speed of a watch or clock
    General: a pair of scales or a weighing device.

    I would ask your “friend to have a look at this list and pick out EXACTLY what he/she means.

    I used to be Very energetic, taking on all sorts of projects both physical and mental. I have always been a “hands on” person, I try to explain exactly what my issues are and why I am always backward and forward to the Doctors/Hospital with various additions to my illness.
    Its the “knowing” look that really pss me off big style. The condescending nod makes me want to rip off their head and go for a PAT. This has become a very useful mental image seeing their head soar over the posts and into a huge bunch of cheese-heads from Green Bay. Try it and see, its very satisfying.
    As we say over here in England “Nil Illigitimus carborundum” Dont let the B*****ds grind you down.
    Have a look on here and have a laugh with those who do understand your issues and ailments.
    My list gets longer each and every day but I still “dont look sick” I sometimes want to walk around with a bandage on my head just for show. But why should I? I know what my problems are, I know what other peoples are, they are bigots and small minded individuals who can see no further than Joe Montana threw a football in a 200mph gale!

  • Jen

    Thanks so much Kelly for putting into words what a lot of us can’t! You perfectly described one of my worst frustrations. For me, this is one of the MOST exasperating realities that we who live with chronic illness experience! When we are giving ALL we can just to make it thru each & every day, it HURTS when others doubt we are really sick & minimize what we’re going thru.

  • baileysmom

    Thank you so much for writing this article. You really summed it all up, I had talked myself into believing that I could do all I once could and ended up on the couch mad at yself for doingit!

  • Anne Edwards

    Thank you SO much for being brave enough to write this! I too was starting to think maybe “the others” were right…I’ve been adding to my endless list of unseen illnesses for so long even my own family now dismiss them…having a really bad time with pain & balance in my ear & head at present, its taken 3 visits in a week to the doctors to get a hospital referral, when that will be is anyones guess! (England)…it really helps me stay sane hearing from other spoonies, thanks again x

  • Susie

    Bless you, Carmel, for being so supportive to your friend. Though she is unlucky inthat she has a chronic disease, she is lucky to have you in her life. You care enough to not only visit the BYDLS website to try to understand her situation, but to actually take the tiime to post a comment. You are a gem!

  • Carol

    So good to read this important message. We all have times when, as you wrote, our brain brays us. Right after those words should be programmed in our brains a positive phrase we have rehearsed to counteract them. We are what we make ourselves on the inside.

  • Cynthia W

    Oh do I so understand this article…it took EIGHT years for the team of doctors to figure out what I have…in the end, by sheer accident, fate, what have you, they figured it out…I have Pulminary Sarcoidosis and Fibromyalgia…I work in a business that I have to be “on” all day…when I come home I can barely walk or function the pain is so incredible…I feel like I went nine rounds with Mike Tyson (sans having my ear bit off)…the meds for the Sarcoidosis have the lovely affect of making me gain a tremendous amount of weight even though my diet hasnt changed…now I am on chemotherapy to try to slow the disease down so I have some quality of life…I dont want to die yet of this disease, I have things left to do…but I dont LOOK sick…I try not to act sick…I am fighting here people…when I finally lose the battle for a day I actually have people act resentful towards me…like I should buck up…uhm I live in constant unrelenting pain…I fake it most days…I try really hard NOT to let it show because I dont want this disease to win…so dont fault me when I finally fall apart and let it take me to bed for a day…I am trying not to die here folks!…I am a spoonie…I DO understand…it may be jammie day today but tomorrow I plan on conquering the world (or at least my small piece of it)!

  • Liz

    Thank you! I think you’ve just summed up the knot I can’t quite untie in my own head.
    I recently got told by a friend that I was “lucky” that I got to spend all day on the couch, and that she wishes she could do the same.
    I wish I had have had the presence of mind to point out that on that particularly day I couldn’t actually stand up without holding onto something because I was so dizzy.
    Yeah sure, spend the day on the couch. Just so long as you understand that it means you actually can’t get up to go to the toilet without clinging to the wall for dear life.

    I’ve spent SO long down playing this illness (even to myself) that some days I feel like no one even remembers that I’m sick.

    I don’t want any special treatment. I don’t want sympathy. All I want is an acknowledgment of what I have gone through, and what I am still trying to get through…. And a never ending supply of coffee and chocolate.

  • Elizabeth

    I totally understand your feelings. People just can’t get it that many illnesses are on the inside only. Right now I am suffering from an inflamed eye and face. It looks like I lost a fight. Went to the eye doctor yesterday and he said it was from my Lupus and gave me drops to put in my eye. Today it is worse but I came to work anyway, now I have to call him and tell him it is worse. Probably anti-biotics and the whole nine yards. So for the only time in my life the people at work can actually “SEE” what Lupus does and can sympathize but all of us know it is the invisible days when we can hardly make it.

  • Sherry C

    Kelly,
    Thank you for this article! I really get what you’re saying.

    I have ‘stuff’ going on healthwise as well. It’s the reason I come to sites like this. It’s really the only place to hear what’s going on inside my head articulated so well by others. As I say over and over again, it makes me feel less crazy.

    However, whenever I read your posts I realize that my stuff may be a ‘big’deal’ to me, but it just doestn’t compare to what you experience. I marvel at your ability to work. You must be a very strong and determined individual. I just have to wonder if people feel so uncomfortable with things that they can’t comprehend that the only way to relate is to downplay the significance of your reality.

    Anyway…again, thanks for the article! God bless you!
    Sherry

  • Natty

    You have just summarised perfectly why this website exists!
    It tears me up inside when my dad criticises the state of my kitchen.
    He forgets that washing up causes me so much pain, cos it’s no big deal to him!!
    I think I’m a very patient person but when people don’t understand I do eventually lose it!

  • Stacey

    I feel like this constantly. I work hard at my job, I smile and tell people I’m fine all day long. But then when I need a minute (or week) to completely break, it’s like I’m making no sense to them whatsoever.

    I have a friend who I’ve just started getting close with, so we spent a couple weeks making the most of our days off together. Well, after a couple weeks of that, I just got tired. My body told me to screw myself, and I ended up on the couch for the weekend. But she acted so disappointed when I told her I was sick; I could tell she didn’t get why I needed to be at home and lazy on my own couch, instead of going to her place to be lazy there all day (movie marathon weekend). But it’s just not the same. And it’s impossible to explain.

    I have a spoonie friend who gets things like that, she is all too familiar with it. So when we went on vacation together (I flew, she drove, we ended up in CA together for a concert), we spent 72 hours together being bums. The concert was at 7pm, and we spent that whole day getting ready at a leisurely pace, no rushing, no last minute touch-ups, we just enjoyed the lazy day for what it was.
    And it made going to a crazy mad concert a little easier to bear physically.

    I don’t know what I would do without spoonie friends. I love my family and friends, but nobody can understand a spoonie quite like another spoonie!

  • Bev

    So last year its Bipolar and this year its SLE. I get the feeling some think Im sitting around in bed looking for more illnesses. Im new to the ‘oh well with the right meds im sure you will be fine and by the way you wouldnt believe what Molly brought home today……’. Makes me want to purge my FB list of so called friends. But no. They just dont get the suffering as they only see me when Im not falling to pieces which is 95per cent of the time. I cant change others way of thinking only my own. Im sick damit and its me that has to live with it.

  • Carmel

    As a friend of someone who “doesn’t look sick”, I know I may never fully understand what my lovely friend goes through, but I hope I never make her feel that she doesn’t have the love and support she needs. She deserves every happiness in the world and I know I speak for everyone who cares about her when I say that we hate seeing her go through this (and it is a very big deal!). We wish there was something we could do to make it go away or at least share the ordeal with her so that she didn’t have to go through it all on her own.

  • I had a ‘friend’ who had seen me go through all this since infancy and once told me that she didn’t ever ask how I was because she knew the answer and that I’d just deal with it since these things happened all the time to me. I realised then that she didn’t quite get it. I don’t see her anymore.

    There are times that I would love someone to feel every single inch of this, inside and out. I tear myself up about the unfairness of it all, get frustrated trying to make people understand. But I’ve learnt that the people that don’t try to aren’t worth it and you need to surround yourself with those that do, even if they don’t understand it all.

    I’m lucky that I can say I do have good support from people, it definitely minimises those frustrations.

    L

  • I agree, I suffer from type1 diabetes, seizures, CFS Fibromyalgia, and I think Gulf War Syndrome. Because I was completely healthy until I got sick in Kuwait. I just feel like I am falling apart but my doctors seem to think I am fine even though just the other day I was diagnosed with Chronic Epstein Barr. I just wish someone would see that I am really sick. I am not a faker. I am not a drug seeker. I just wish the VA could understand.

  • Had a friend say to me yesterday on the phone, “maybe you need to look at your life and see what is out of balance.”
    My response to that was asking her if she would ask a child born with Type I Diabetes that question.
    My life had balance BEFORE I got sick. It is only out of balance now because of my illness.
    So frustrating!

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