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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  • Corrine Brzys

    I completely get it. Thank you for posting what I think a lot of us go through at some points. I have CRPS (used to be known as RSD), and I’m amazed at the way some people brush off the realities of my life as NBD. Or it seems like it, anyway. It’s definitely a feeling I pick up on. I have definitely let my mind go to that place where I think those same things you wrote…and then a flare comes and reminds me “Oh, no. This is the real deal. I’m never leaving you. I’m a big deal.” I try not to get upset with people. People are people, and most will never understand all the intricate horrid details of my daily life. And I don’t even have the energy to waste on trying to make them get it (hey, I’ve only got so many spoons). But I think it’s healthy to feel the feels before ya slap sunshine on top of it, you know? Anyway, thank you for your wonderful articles. 🙂

  • Christle Waugh

    Yes.. I have given up on listing all the diagnoses…I get ,all the time..u r too young to have that…and .. No one has that much wrong! No..I’m not a hypercondriac..tho..at times I feel like people see it that eat. Especially telling a Dr of a new symptom that has popped up to cause even more problems. Half the time, I just don’t even bring it up..I don’t make extra appointments and just stick to regularly scheduled ones.. I don’t want the Drs to start thinking like the people who think they know my body better than I do. I hate pills with a passion..especially pain meds and anxiety meds… Avoid them when I can. But, some days.. I chose their fog and being able to sleep. Even tho they don’t really ease symptoms..at least they make my brain so screwy that I don’t care..just for a little while, so I can rest. Sorry this is so long, but I let it out on this site. No one else gets it and putting it on Fb has caused me nothing but heartache when people I thought cared can be so misinformed and sometimes just mean.

  • I am dealing with this very issue right now.  I have lupus, raynaulds, hypertension.  If one more person says I need to get out more, I’m going to scream!  Let them try to walk with these painful joints and back pain.  I am blessed to have a wonderful understanding husband.  He goes to every doctor visit with me.  But, everyone else seems to shun me like I have the plague now.

  • Liane

    My names liane and I have neurofibromatosous. They are not sure which of the three it is, therefore can’t treat it accordingly. My NFs are located in my brain stem, head, numerous in my spinal cord and neck and a couple in my hips. If you are unaware of what NF is, its benign rumors that grow on nerve endings therefore is classified as a neurological disability. There are times where the pain is moderate and there are times when it is extremely severe. The doctors technically can do surgery to remove it but it may grow back and I would be paralyzed from the neck down. I was diagnosed with this when I was 4 and I am now 22. In my opinion I disagree with your above essay. The main thing that affects An illness or disability is mental state of mind. With this said please note I am not demeaning or Putting down your illness as I know it is plenty more life interrupting then my own. What I am saying though, is People with disabilities or illnesses should not play a victim role or self pity themselves. It isn’t a big deal. It’s not I’m sorry. It is life. We set our own barriers and we pave our own roads if we so choose. Yes you have to go through extensive effort and care to live a “normal life” however that’s the way it is. Put a smile on your face, pull up your socks and appriciate what you DO have. Life itself is a gift, no matter how we have been given it. You are the amazingly strong person you are today because of what you have overcome and know that you will continue to do so and in turn become that much stronger. I was expecte to not graduate highschool and be paralyzed at the age of approx. 12. I graduated with honors ( including have my school years absent due to pain ), moved on my own with my loving boyfriend at the age of 18, said no to surgery, represented canada in a spokes model contest and am in college with a mark not lower than 85 and still going strong. I have plenty bad days where I do not have the strength to drink my own water and have overcome addicition to pain killers and much more and have achieved all this for the main reason that me and the ones whom I love in my life do not pity me. They do not see me as a victim. They do not see it as a big deal. They; and myself see me as a strong, independent, confident positive young women who will not let barriers be my boundaries. They are my challenges to which I will not lose. Please do not take offense to this. I am trying to portray that it simply does not have to be a big deal. Have a positive outlook on life and challenge it as though it is your number one competitor and you refuse to lose. All my love.

  • Kelly

    Kelly,
    While I can completely understand and empathize with your feelings of aggravation regarding this, you need to find a way to let that anger and resentment towards those people go. First of all, as a fellow spoonie, I know that stress will make you more sick and take its toll on your body. Second of all, you need to realize that no one has walked your path; although we can all empathize because we are on “similar” paths, none of us can fully understand the depth of the pain and emotion in another’s life. Those people who make it seem like its no big deal have problems in their lives that none of us could empathize with, just as they cannot empathize with us. However, make it a priority to surround yourself with people who are going to bring positivity to your life regardless of whether they understand what you are going through or not. In closing, it is IMPERATIVE that you remember to keep yourself in check – Do Not Wish What We Have On ANYONE. Yeah, maybe they would learn a thing or two if they had to walk in your shoes for a day, but is that what you really want? I wouldn’t wish this on my worst enemy. Be an advocate for yourself, don’t look for others to be that for you. Educate yourself on ways to naturally heal your body, you will learn quickly that when your body is clear of excess crap, your mind is clear and your body is healthy. Take care of yourself and I hope you feel better soon.

  • Matia

    Tonight, when I couldn’t go to my nephew’s birthday party, my sister in law text me, no problem…I’m used to you not showing up. Low blow that crushed me. Makes me question myself when she truly has no idea of what my life is really like. Yes, I do have to cancel on plans last minute because I am too tired, or am in too much pain…I feel like a broken record sometimes and that I constantly let people down by not showing up, but the reality is what it is and only I really know that reality because only I live in this body. Oh well, another one bites the dust.

  • That happen to me a few months ago Well out to dinner with friends I’ve had since I was 15. when I asked I want to the doctor say, I give an answer about pain management and something else I can’t remember. I then said I have been Very blessed With my friends and family Who have been so patient and supportive. much to my dismay the air turns ICY! ! Some of the key comments Include you’ve given up, You don’t try, You don’t fight, It’s because you’re depressed And you don’t get out the house enough. Found my all time favorite…. you are stuck and we’ve moved on. Low blow since 2 were pregnant at the the time are married and do not live w parents (my mom is amazing no issue there ). Now I am so shocked and angry and in the middle of a restaurant I start crying. some of my truest friends how to share ignorance devastated me. since then estate on the sidelines, only recently come in closer because 1 friend had her baby in june and the other today. I have doubted myself plenty since getting sick. the only thing that has come from it is an invitation to not trust myself
    No more!! Just because I got sick doesnt mean I don’t know myself. I just figured out I know myself better than ever no explanation needed.

  • Meg

    Thank you so much for writing this. I was in dire need of just one person out there somewhere who “gets” it.

    I’m struggling so hard through my chronic illness mainly migraines and fibromyalgia and trying to work through some new insanity of RLS and swollen joints, extreme finger joint pain, wonky shoulders and knees that want to go whatever direction they want, never mind where they ought to, plus trying to be the best mother i can to my dear children, both under 5.

    This week my husband got an ear infection. Had to take off work, get it looked at, called off today, will most likely call off again tomarrow. He’s had a beautiful almost 36 hrs of bedtime, no real responcibility for the kids. In the meanwhile, I’ve gone through all the maxalt I can, my head feels like it is going to pop straight off, tweaked my left shoulder trying to pick up and rock the 2 year old who misses her daddy, knee twisted trying to make dinner, and I’m just D O N E. But I can’t be, they need me. I can’t be done tilll at least Saturday cause he’s too (sick). Bllllahhhhhh!!

    I wish that for a day, my husband could really truly understand. If I push too hard with migraines this bad I end up in the hospital, and with my luck, thats where I’ll be Sat. 🙁 I don’t even want sympathy anymore, just some humane treatment. If you get days off time when your sick honey, how about at least a nap for me when I am? One single hour, no one jumping on me, trying to pull my hair out? I just hope and pray I can make it through the years to be here to watch my kids grow up.

  • fliss tams

    thank you for writing this my good friend sent me the link,its so true thank you

  • I just went through this yesterday! It took me by surprise and I cried too. I have definitely concluded that until someone has physically been present with me in the ER or been diagnosed themselves, they can never understand! Thanks for writing this.

  • Sometimes I even have to roll my eyes at the list of all my ailments because there are so many I can’t easily recall them. I can feel people’s eyes glaze over and occasionally hear “one person can’t have that many things wrong with them at such a young age” or other such nonsense. My doctors start to harp on me about how many meds I’m on (13 daily plus others as needed), but when I ask which ones are non-essential that I could discontinue, they can’t find a single one that I don’t need.

    If you’re sick enough to have your life permanently altered, that IS a big deal. You can learn to deal with it on a day to day basis so that others may think it must be small potatoes, but deep inside, you know better. Remember that many of the doubters would be positively FLOORED if they had to live one day of your life.

    The cost of coping well is that you make it look easy. But that’s not necessarily a bad thing.

  • vickie hahn

    Thank you for this great article. You said things I wish I could get across to my family and friends…who expect you to go all the time…and make nasty remarks…YOU DO NOT LOOK SICK…sometimes I just want to disappear…the pain on some days is so bad. thank you again.

  • Shannon Ordonez

    Like most articles I read at but you dont look sick this strikes so close to home. It is “nice” to read things like this on the days you do feel so alone and isolated. As much as I hate thinking others are suffering like me… I must admit to be a little happy that I am not all alone.

  • Melanie Hayes

    I cannot thank you enough for writing this.

    I am sitting here, tears in my eyes, trying to find the words to describe how your story made me feel. I had logged in looking for a bit of comfort after a conversation with my neighbor left me in tears.

    This is a woman whose opinion is FAR from important to me, but for some reason, tonight as I listened to her tell me all about “people like me.” Entirely uninformed as usual, she told me that since “people like me” are always going to the emergency room “just because you don’t feel good”, her husband (she doesn’t work) has to pay higher taxes to cover health care cost.

    I am 30 years old, work almost 40 hours a week, and I have no health insurance. Oh, and I also have FMS/CFS. I didn’t bother to explain to this woman that just not feeling good means different things to “people like me”, or that some times, yes, the emergency room is the best option. Unfortunately, I shouldn’t have had to–she’s a spoonie too.

    No, instead I made some rude remark and came inside. I let her ignorant remark eat away at me until I was inside sobbing, which was where my non-spoonie fiance found me when he got home a bit later. He reminded me that it doesn’t matter what anyone else thinks and that I’m stronger than that.

    That was when I logged in and saw this story. It was absolutely impeccable timing, and it was EXACTLY what I needed to hear. Thank you so much!

  • Melanie Hayes

    I cannot thank you enough for writing this.

    I am sitting here, tears in my eyes, trying to find the words to describe how your story made me feel. I had logged in looking for a bit of comfort after a conversation with my neighbor left me in tears.

    This is a woman whose opinion is FAR from important to me, but for some reason, tonight as I listened to her tell me all about “people like me.” Entirely uninformed as usual, she told me that since “people like me” are always going to the emergency room “just because you don’t feel good”, her husband (she doesn’t work) has to pay higher taxes to cover health care cost.

    I am 30 years old, work almost 40 hours a week, and I have no health insurance. Oh, and I also have FMS/CFS.

  • Li

    Of COURSE it’s as hard as it feels! Don’t ever doubt yourself. And remember you’re not alone – we spoonies, all of us, know exactly what you’re going through!

    Wishing you love, peace, and more “good days” to come!

    (((HUGS!!!)))

  • Patrice Howe

    Never knew my one post would get so many responses—just goes to show that we are a special group that really no-one understands–including most loved ones. Sad for us–but great for us that we have this great place to vent & recieve understanding also!!!!!!!!

  • Thank you for writing this.

    We’re human. That social pressure, the tendency to start believing the consensus of ignorance gets under anyone’s skin. They don’t want to believe it’s real. They don’t want to wrap their heads around the notion that bad things happen to good people all the time. That life’s just life and sometimes diseases don’t either get better or kill you.

    They don’t want to believe there are diseases that can’t be cured. Or that anyone in America has any birth defects.

    I had to train myself to judge my pain levels by how much they impair me, because I got too used to ignoring pain. I can’t believe how much I ignored that is so obvious in retrospect – how many treats and things other people enjoy were sheer torture and I didn’t say so, just got dragged along into them because I was a teen or a young adult and those were the rewards of whatever. A lot of rewards aren’t. Ice cream makes me sick to my stomach, I’m very glad that frozen custard or yogurt doesn’t.

    I love it here. I’m fighting myself again right now, forcing myself to rest today because my back is acting up and if I get up to pack, I’ll lose many more days than I would just accepting it and waiting till I’ve rested enough before starting in on it again. I’ve got only two weeks before I move. I’m going to have to pack everything else I own in that time, so that some of it can go in storage and some of it go immediately to where I live.

    It’s hard to fight the urge to just tough it out, but I had to learn that was a really stupid thing to do. I crashed my life on too many other occasions by just doing what needed to be done because it needed to be done.

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