“Nice To Meet You…I’m the Sick Girl”

 

I feel as though I spend all of my time trying to get my spoonie-self heard. I wear my spoon pin to work- every day. I remind friends, family, co-workers about treatments and such. On the days when I call in sick to work or cancel a social function, I remind these people what I am dealing with. You can see their eyes glaze over the minute I start talking. In one ear, out the other. And it would be nice to not get such a shocked reaction when I call out sick. They say,”oh my gosh! YOU’RE sick?” Yes, the chronically ill girl is taking a sick day. I don’t take that many, and you really shouldn’t be so shocked. As I constantly try to remind you, I am NOT normal. There is stuff (lots of it) wrong with me. I feel like I cannot get this message out there enough. In my head, it sounds like I’m constantly screaming.

So a recent Christmas party completely threw me for a loop. Last summer, I went to a conference of patients who are like me. There I met a set of sisters. One sister is sick like me, and she lives on the west coast where the conference was held. The other sister is healthy and was there for moral support (how nice!), and she lives in my home town. I completely hit it off with both of these girls. So exciting. Finally, some girls I have stuff in common with—but not just the regular stuff (love of Bravo Real Housewives), the sick stuff too. As I like to say, they “got it”. No screaming necessary.

So we leave the conference, and I start hanging out some with the well sister. And she’s awesome. I wish her sister lived closer with us. And well sister was throwing a Christmas party. I was super psyched to go. My husband and I only knew the well sister and her husband at the party. But me being the outgoing person that I am, we began to mingle. Always good to meet new people, right? And here’s how almost every single conversation began:

party guest: “So, how do you guys know the hosts?”

me & husband: “Oh, we met Leslie at a conference this summer.”

party guest: “What kind of conference?”

me & husband: “Well, one for patients. Leslie was there with her sister, Jessica. Jessica

and I have the same thing.”

I even overheard my very shy husband off on a conversation of his own (a completely rare occurrence, by the way):

party guest: “So, do you guys know the hosts?”

husband: “My wife is sick like Leslie’s sister, they have the same thing.”

And then the conversations went something like this:

party guest: “So if you have what Jessica has, how sick are you?”; “Are you able to work?”; “You can work full time?”; “Do you have kids and deal with all of this?”; “How are you able to be at a party like this?”; “What kind of treatment do you get? When? Where? How often?”; “How long have you been sick?”; “How did you find out?” On and on it went…..

Now after so many years of glazed over eyes, lack of questions, and basically feeling like no one who knew me gave a damn? Here was an entire party full of people who genuinely seemed interested! They could have easily just said “nice to meet you” and headed for the bar. But they actively engaged us and asked thoughtful questions. It was thrilling and bizarre all at once. Here I was with people’s full attention and could spill it all. And here was the truth of it:

All night long, I was being introduced as The Sick Girl.

What a label. But, in my every day life, I practically beg to be labeled, don’t I? And it never sticks. But here at this party, I owned that label. How strange. We had a fantastic time at the party, but when I got into the car that night, I said to my husband, “wow, that was bizarre being introduced as the sick girl all night.” And he said, “well, it’s the easiest way to describe how we know them. Plus, at least people acknowledged it. Isn’t that what you’re always wanting?”

Maybe… I guess so…. Perhaps what I’m looking for in my every day life is a combination of both. I’d like my illness to be acknowledged. It doesn’t have to be the main topic of conversation. It doesn’t have to define me. But if people would accept that it’s a part of me, I think that would be nice. Maybe if I could get a little validation here and there, now and again, maybe this spoonie would stop screaming, even if only in my head.

 

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, Hashimot’os disease, insulin resistance, and a host of other diagnosis. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and on Facebook at Kelly Jaeckle Clardy.

©2022butyoudontlooksick.com
  • Maureen Colson

    This was such an incredible story. I just had to copy & paste the last paragraph to my comment:

    “Perhaps what I’m looking for in my every day life is a combination of both. I’d like my illness to be acknowledged. It doesn’t have to be the main topic of conversation. It doesn’t have to define me. But if people would accept that it’s a part of me, I think that would be nice. Maybe if I could get a little validation here and there, now and again, maybe this spoonie would stop screaming, even if only in my head.”

    A little validation?! Wouldn’t that be just amazing to feel? I have so few people in my life who understand, let alone ask about how I feel, let alone will listen and not roll their eyes or hurry to get off the phone because I’m just “complaining” again.

    And the advice! I know most people mean well, but to either ignore you or tell you to basically get over it, (others have it soo much worse, afterall)…Well, how would they know? How would they know what others’s lives are like or what my life is really like, in reality? Do they hear me cry out in pain every morning when I can’t move, let alone watch me lie in bed for sometimes an hour before I can start my day, because the pain is so great? Do they know how badly I feel when I get irritable or don’t feel like being good company? Because I don’t want to act like I’m not interested in my friend, but I just hurt so much that I don’t feel like pretending to be in a happy mood or putting on a smiley face and making small talk. Sometimes it just takes too much effort.

    So, people do shy away. They think all we do is complain, that we are always so self-focused, and that maybe we aren’t interested in them, let alone any fun to be around. So, yes, validation, that would be an amazing feeling!

    I actually have a Godmother, who has suffered with CFS & other pain disorders & ailments since I was young (for like 25 years now). I remember what people would say about her having “Epsein Barr Syndrome (now called Chronic Fatigue Syndrome, if I am correct). (Which I also can add to “my list” of disorders/ailments myself now). Anyways, people doubted it was even a real illness because it was new… and she didn’t LOOK SICK! Fast forward all these years later, and I never thought I would rebuild a relationship (we had drifted apart) based on love and mutual understanding of our pain and fatigue.

    And I certainly never thought for a moment that I’d grow up and become someone who suffers like she does! What a horrible thing to have in common. But thank God I have it in common with her. She loves me and she “gets” me. And vice versa.

    So, it’s not like I don’t count my blessings. It’s just so hard sometimes to see them through all the challenges. I know and I always say that everyone has their own set of challenges/problems/issues to deal with. And who is to say what hurts one person more than another? Everone has their own plate full. I know this. But this is my plate. If I can acknoweldge your’s, can’t you please acknowledge mine? And not just dismiss my feelings/struggles? Because that really hurts my feelings. And I have enough “hurt.” I don’t need anyone adding to it!

    I have such a long list of medical issues, that even my best friend said earlier tonight (after my out-patient neck surgery)…”Geez, you have a lot of issues.” NICE! I know he didn’t mean anything by it, but it’s still a stigma that I don’t like being associated with…”the girl with all the issues”… all the medical problems: heart condition (new), Fibromyalgia (for several years)…which brings along with it: CFS, RLS, Migranes (from HELL), TMJ (which aggrivates the migraines), IBS (which hurts more than anything else sometimes… always wonderful to have no notice when it comes on, as well… not embarrassing at all), high blood pressure, osteoarthritis, herniated discs in neck and back causing constant pain… And the worst part of this is, I’m pretty sure I’ve forgotten/chosen to name more than a few! I take soo many meds, I can’t keep up with them! I’m always forgetting to take something…usually at night because I pass out before I remember to take them. And the doctor’s appointments… forget about keeping track of all of them! LOL!

    See, even now…I catch myself and feel like I’m just complaining! I’m thinking, “Will they see it that way, too?” I don’t want to be a constant complainer! I try so hard to be positive, this just isn’t the time I’m choosing to put on my positive face. But I do have one, I promise! I have a good sense of humor, I am compassionate, with my friends, family, and clients (I am a counselor), I help people and encourage and support them…I usually crack a lot of jokes, believe it or not! I’m more than just a complainer. I’m more than just my illnesses. Can’t anyone see that? Can I see that?

    One last thing: Colin should not be allowed on this site. He is negative and rude and obviously does NOT understand one bit of what we feel and why we are trying to support each other. He is the opposite of a supportive person. He is an ignorant person. And I hope never to see his name on anything associated with this site again… Just my two cents.

    Thank you for listening… well, for reading! 🙂

  • I’m the Sick Girl!

    I feel like I’m the sick girl all the time. I don’t mind talking about my illnesses but I don’t want to be talking about it all the time either. I try not bring it up with anyone I’ve just met but I get those how are yous? that I still don’t know how to answer and to avoid telling everyone my long story I usually just say OK. I appreciate being able to talk about it with other friends with similar problems though, because they’re the only ones that seem to get it. I know I need to vent sometimes and laying it all on one person all the time has to stress them out. Being at home all the time doesn’t leave me with much more to talk about though!

  • Pretty much the only place where I get to socialize with healthy people (medical appointments and trips to the pharmacy comprise most of the rest of my ventures outside the house) is at church. I do not bring up my ailments unless they come up in conversation. But I am asked frequently what I do for a living, or why I don’t do pot lucks or other social or volunteer activities. I gauge the interest of the person asking. If a simple “I’m unable to work due to illness” seems to satisfy them, I don’t elaborate. But if they truly want to know more, I see this as an opportunity to educate them about whatever it was they asked about (like my celiac disease keeping me from doing communion) and to show them what a person with invisible chronic illness is like. I answer questions honestly but pleasantly. I get a lot of unsolicited advice and comments about how I must be feeling better if I’m smiling, but I just keep on grinning and try not to hold it against them, as long as they are not being malicious (and most people at church sincerely mean well). Always consider the source.

    Perhaps that party was also an opportunity for people to learn about your illness so that they will understand the sick sister better in the future? Part of advocating for awareness of chronic illness unfortunately sometimes means being known as the sick girl.

  • This hit me so hard right now! Wonderful writing, by the way! I just visited my sister in the hospital who was diagnosed with Congestive Heart Failure (an apparent “real disease”) only to be told by her I am the weird sister in the family. The one who “Gets all the weird syndromes that have fake names, like Raynaud’s Syndrome and Restless Leg Syndrome” I was speechless. She was actually “one upping me” because she was diagnosed with heart failure and I just have Fibromyalgia and chronic back pain, not to mention the “weird” syndromes above.
    Who cares that I drove an hour one way to see her and be blasted by her, only to drive one hour back home and crawl into bed because my pain, which was a 6 is now a 9, thanks to that drive. Who cares how much it took out of me to go see her because I love her and care about her? But I will spend the next 2 days getting over that drive. Who cares because I am just the “weird” sister?
    I am tired of reminding my family, friends (which I have most of those), and any one else I have contact with. I am tired of reminding them how much pain I Live with daily, and thank God its me and not one of them, because they couldn’t handle it. As my DIL reminded me, “They don’t see you everyday, fighting to get down those stairs, or doubled over in pain, walking with a cane just to get a drink from the kitchen. All they see is when you feel halfway decent and go to their aide. All they see is the woman who pretends to be strong for others, when inside you are cringing from the pain. They don’t get to see the bad days like I do Mom. You only let them see how good you are feeling.” She’s right you know. And I love her for reminding me of that.

  • Dang girl you hit the nail on the head! That glazed look…do you ever get this on the phone when your trying to describe it or cancel on someone on the phone: “Yeah…uh-huh..uh-huh..” like they cannot hang up fast enough? And like you can just feel them rolling their eyes? It sucks! Thanks for sharing. We should organize sick parties in our home towns on here!

  • Springdot

    Just wondering why Colin was reading this in the first place. Come on Colin, why are you here?

  • Claire Powell

    When I read this I didn’t feel so alone. I’m having trouble finding the strength to cope with my illnesses…so I admire you for staying strong 🙂

  • Dottie Balin

    Great article, very well written. I can relate with you and your words are so true. Thanks for sharing. I have some family members that still don’t get it. Hugs 🙂

  • Mimsnan55

    Thank you all for your comments. I totally agree about the glazed look especially my family. I sometimes get scared to say if I am in pain, especially when my daughter asks me to babysit my two small grandchildren, I can see it in her eyes and hear in her voice her disappointment that I have spoiled her plans. One of my grown up sons does not even visit anymore, even though I don’t speak about being ill, but as you all know when your in pain I think the eyes give it away and the fact that you can’t lift your head off the pillow or the pyjamas that seemed to be stitched to your body for days on end! Just nice to know that you all understand.

  • Linda

    Thank you so very much for putting this into words. My sons used to say they just hated someone saying “you sound good” when on the phone and “but you look good” when face to face. They are now gone but always with us. Yes there is not way that we (healthy) ones can know how you feel but I just want you to know that I really can feel your frustration but do not know how you feel if that makes sense.

  • AKAseemedfine

    @Colin: EH? I think you are that brother-in law the family only sees at a cook-out or holiday meal half-dozen times a year; the one who always makes a big fuss, embarrassing and mortifying me by actually Standing UP & pointing at me; LOUDLY demanding to know, “Why the ‘Heck’ aren’t you eating your steak?”! When everyone else at the table at least vaguely recalls that i lost most of my innards to my invisible disease. I am always invited because I do have a fun personality I am caring and intelligent.
    I just can’t eat certain foods..Period. I try to be discreet. join in the preparations and fun without making any fuss or drawing attention to my ‘Tummy Troubles’ as they are called/whispered about by my in-laws. This is why we Spoonies need to be acknowleged! it helps us deal with folks like you.
    Please pay attention. Then we will only have to say it once: I am Sick. Get it?

  • Ouch @ Colin

  • Dear Colin, No, we don’t need everyone to know what illness does or does not define us. What happens in general conversation is innocent enough. “What do you do for a living?” Well, actually “I’m on SSD for fibromyalgia. Or “What do you like to do in your spare time?”um, “sleep”. We can not escape who we are because chronic illness is our lifestyle, it defines who we are by limiting who we can be. Stick around long enough and find the real person inside. Thats what the commentator is hoping and thats what I hope for too.

  • Leanne

    Thank you for writing what so many of us can’t put into words. This essay speaks volumns…I wish I could put it in front of everyone I know.
    If ‘they’ would listen, really listen, just once, maybe I/we wouldn’t feel the need to keep repeating ourselves. I feel that ‘they’ are tired of listening to us/me.
    Between the fibro and chronic back pain, I’m unable to work for now. I can only hope ‘they’ get it.

  • Suzanne

    I agree – who wants to “BE” their illness – but it’s so hard for people to understand. I’ve had a good couple of weeks after working with some ministers and native healers – they were fabulous weeks!!!! No cane either! Had a stressful week while visiting family in another state because I overdid it. I am paying for it now that I’m back and people don’t get it. I was fine a few weeks ago – I’m not as fine now – what’s going on they say??? Trying to get them to understand that this horrible illness has a mind of it’s own – well – I know that I have to control my physical activities – but it’s hard when you only see those grandkids every few months!! I have to say that I am fortunate that I have ‘found’ a long lost friend from HS, who is also doesn’t look sick and we are there for each other. In fact, we are planning a vacation – because we know that we won’t be ‘holding anybody else back’. It’s perfect for us!! Hang in there fellow Invisibles!!

  • Jen

    People *do* get tired of hearing that I don’t feel well, but NO, I don’t want to talk about it all the time – in fact, sometimes I don’t want to talk about it at all!

    The comment about not wanting to BE your disease… I’ve always said that I have fibro or I suffer from arthritis. However, I find myself saying I AM bipolar. I don’t want any of these things to define who I am, but they do definitely take over my identity.

    I’ve been homebound and not able to attend church but a few times. There are people who judge me and say that God is a healer; if you can make it to doctor appts, how can’t you make it to church? Yes, I believe that God is the ultimate healer, but it’s not as if I’m going to walk into church and all of my illnesses will disappear. I’ve lost many a friend due to my conditions.

    I have a h/c placard for my car. People look at me because I “don’t look sick” and glare, thinking that I don’t need that assistance. If they only knew…

  • Colin

    Why does everyone need to know you are ill anyway? It sounds like you dont have enough of a personailty to be interesting so you live off your illness as a way of getting people to notice you.

  • Well written and absolutely true! I, too, wish there was some sort of common ground between the two.

  • Debbie

    Wow…. u hit that right on the nose!!! It is hard when even people in your own family who have watched you get worse as time goes by, not acknowledge that what you have is “real”!!

    I do understand how frustrating it must be to our families who just cannot understand how we could possibly feel so miserable or have so much pain if there are no visible signs of such!! That’s why this website is great – But You Don’t Look Sick really just sums it all up!! I hear that exact phrase almost daily. And actually, it is starting to really get on my nerves. I mean, what exactly do you say to that?? Oh, thank you?? Or, really, because I feel like crap!! Most of the time I just force a smile. Why is it that just because you cannot see my illness it isn’t there??

    Thanks for your note…. wish I could find some of those “understanding” people………

  • Kim

    A little acknowledgement goes a long way! **hugs**

  • natty

    you are so right.
    I would feel completely exposed and embarrassed to be introduced to everyone as the sick girl, but normally i feel ignored and isolated.
    I wonder why there is no happy medium?!

  • e

    That last paragraph….’nuff said. Perfect.

  • Tammie

    this is kinda the way I feel everywhere that I go. My invisible illness is just visible enough for people to ask questions, and if they don’t notice that, they inevitably ask something that leads to it…such as “what do you do for a living” or do you like to “insert painful activity here”?…followed by “why not?”

    Then the ones in the know say something to the effect of “don’t get her started”…and I feel a lil weird about the situation for the rest of the night…

  • K

    🙂 I couldn’t bring myself to tell people at the new church we visited today that my current full-time vocation was “Getting better from chronic illness” So I just said “daughter and bookworm.” Complex stuff.

  • Elizabeth

    Wow – I just wrote something about this last night….the whole “eyes glazing over….” How do we ever find the balance between people acknowledging what we deal with everyday, without making it feel like that is ALL we want to talk about?!?

  • Kelly,
    Thank you for saying what so many “spoonies” feel.

    Here’s a few extra for you.

  • PamC

    BRAVO!!!!!!!!!!!!! Oh man… can I go next year? 😉

  • Wendy

    I don’t want to begin sounding like a hypochondriac, but it is like it I don’t have some deadly wart hanging from my nose, I am fine. Chronic Pain is not good enough, I guess…that is why I love your “But You don’t look Sick”. You have it dead on!!

  • Ashley Morgan

    The last paragraph is dead on. I don’t want to BE my diagnosis, but a little validation goes a long way. *hugs*