Defined by an Illness? Milking Your Sickness? That’s Not My Cup of Tea! by Ashley Boynes-Shuck

[Disclaimer: this post isn't meant to offend anyone and is all personal opinion relating to MYSELF, my unique individual situation, and how I live my life. It isn't casting judgment on people who have a different point of view, rather, it is just explaining my perspective and offering some food for thought......]


In a world full of stereotypes, it is easy to forget who we are as individuals and to just do what is expected of us based on our abilities or disabilities.

I might have an illness (or…well…a few…) but I am not a fan of “milking” my illnesses, or being labeled because of them.  I am also not an advocate for letting your disease define you. I think we should all say to ourselves, “who am I?” and remember that the answer isn’t just “a patient.”

Don’t get me wrong – if you live with a chronic illness, it is a HUGE part of your life and thus a BIG part of who you are. That being said, it shouldn’t be your “main identifier” in life. It shouldn’t always dictate what you do, or how you look/believe/behave/act. We also should be certain not to rely on “secondary gains” (Gosh, I hate that phrase) as a result of our conditions. While most people would cringe at that notion, there are many people who do thrive on the pity and attention thrown on them for being unwell.

I know arthritis and my other ailments are a large part who I am. But, they are not the “main” part of who I am.

While I am fine with being a “face of young arthritis” and telling my story  openly and honestly to anyone who wants to hear it, I do not believe that side of me IS me. I am more than my illness and think that you all should strive to be, too.

I take many steps to ensure that I don’t let my diseases overtake my life. It’s all about adapting.

I have separated my personal/main Twitter and Facebook accounts from my “Arthritis Ashley” account. Why? So that people don’t get the idea that “all I am” is my illness. I am also a wife, a writer, a social media pro, an animal lover, a fashionista, a bookworm, a Steelers fan, a Christian, a philosopher, a pop culture junkie, and so forth and so on. I couldn’t bear to only talk about my illness on social media when there are so many other huge parts of my personality and my life. Another example? I am not physically capable of working full time anymore. So, instead of quitting and letting my ailments “win,” I work for myself. I don’t go out as much anymore, but when I’m able to, I do see friends, and when I’m not, I’m sure to keep in touch via email, texting, sending cards, etc. It’s all about adapting and adjusting, and making do with what you have.

And, here’s the biggie: I do anything and everything in my power to not “look sick.”  Just yesterday, I got my hair extensions put back in. My hair was still sparse in the back from my brain surgery, and thinning from Methotrexate. So, I decided to fix what I could, how I could. I have gone on a diet and started exercising as best I can because I gained weight from Prednisone: ya gotta do what ya gotta do. Sure, I’ve spent a lot of money on makeups and products to hide those dark under-eye circles — but to me, it’s worth it. We all have our “thing” and my thing is vanity. So, one thing you’ll never, ever catch me doing? Milking my illness.

What I mean by this:

At a recent event for arthritis, I told someone that while I was wearing flats, I had a pair of heels packed in my bag in case I wanted to throw them on briefly for one of the meetings we were all attending. (Mind you, these meetings were seated, so I would literally just be wearing the heels for show and would not be on my feet or walking around in said heels.) I said I just brought them in case I felt the need to spruce up and look nice for a bit. A fellow rheum patient who overheard me literally scolded me — and it’d be one thing if she was encouraging me not to wear them because they may cause pain or be bad for my back and my knees, but no…she wasn’t concerned for health reasons. What she said stunned me. She said if I wore them that I’d “look too healthy” and we wanted the people we were speaking to, to “feel bad for us.”

Hold up! Anyone who knows me, knows that this is NOT my style and that was NOT the thing to say to me. I do not want people feeling bad for me. I told her, “I can get my point across while sharing my story through my words and my  personal truth, regardless of what shoe I am wearing. My goal is to NOT look sick. Not all people with RA *do* look sick. And that’s fine – the disease is different for everyone”  She missed my point and continued to argue with me saying that it would be wrong to go in there “looking nice.” Well, I held my head up high and told her, “I won’t ever let my illness change who I am. We all can make our own personal decisions.”

I understand what she was saying. And, ya know, I ended up not wearing the heels not because she said anything but just because, with how busy we were, it just didn’t cross my mind to change.  But, you know, I believe that my story is compelling enough to make people listen and empathize without props. I’m not going to walk in there wearing orthopedic shoes because – while that is FINE and many people do have to or choose to wear them and there is nothing wrong with that – it ISN’T ME. I wouldn’t wear them normally, so why wear them just for show? Isn’t life about being honest, being true to who you are, and being authentic to your real self?  I just can’t see letting arthritis dictate my personal taste and my style.

In fact, I HATE when people can “see” my illness. After a recent trip to the gym, after I’d changed in the locker room, I walked out into the parking lot, limping pretty badly as I was wearing a pair of low heels. Other than sweaty, gross tennis shoes that would have looked ridiculous with what I was wearing, these (very cute) relatively low heels (but still heels nonetheless) were the only shoes I had with me at the time. Regardless, I wanted to wear them as I was meeting a girlfriend for dinner. As I was being a gimpy girl, limping around and probably admittedly looking ridiculous, a group of young boys audibly made fun of me. Now, that bugged me. I was frustrated enough to be limping, and their ridiculing was so offensive and hurtful to me. To be honest, I got into my car and cried, but, you know what?  I decided that I wasn’t going to take them off. It wasn’t a far walk from my car to the door of the restaurant, and when I got in, I’d be sitting. But, I’d be sitting in the outfit I chose to wear, despite childish punks thinking I looked silly, and despite arthritis trying to tell me what to wear. So, yes, I’d possibly pay for it the next day with pain (how is that really any different from most days anyway?) but was I going to worry about what others said if I walk with a slight limp? NOPE. I do what makes me happy, and I do not care what others think…and limp or not, I looked and felt fabulous in the outfit of my choosing.

I overheard another person at a recent conference saying that they didn’t usually really even need a cane but used it so other people would see that they have an illness and how bad their condition truly is. Again, I understand that mindset to a point, and it’s fine – but that’s just not me. I don’t want people to look at me and think that I’m sick or that something is wrong with me. (In fact, quite the opposite!)  … If they are able to see my disease (i.e. when I’m walking with a limp) then that’s fine. I don’t care if they are going to feel sorry for me….but…that’s never my goal. Sure, LOTS of people do not have a CLUE how badly I hurt or how sick I really am. However, I educate them with my words and my advocacy, not with crutches or canes or a wheelchair that I really don’t need. It is fine if people DO really need them. And, not gonna lie, there’s days I could, of course, use one of those aids to help me through. But, I refuse to do so until I absolutely, 100% cannot get by on my own.  I don’t want to “give in” — especially if it would just be for show.

The point is that I refuse to let my illness define me. I refuse to change who I am, what I wear, what I do, or how I behave just because of my conditions. We all make our own unique decisions day-to-day. One day, I may want to wear heels and be able to. Another day, I may be able to only wear flats, and another day, I may literally not be able to walk. Each day is a new day and I refuse to spend my days worry about how a sick person “should” look or what healthy people “might” think. I also won’t “milk” my illness for attention or sympathy. I’d rather get attention for positive things rather than for always being the sick girl. Of course, I’ve tried my best to turn my negative situation into something positive, and so, if I am recognized for that, that’s fine….but to JUST get attention solely for being sick or disabled? No, thank you. Not my cup of tea! So, I do everything I can to get healthy & be better, or, at the very least, look the part, and to live a normal life. We all deserve to live as best a life we can, even if it isn’t totally normal – so never lie to yourself about who you are or what you can do! You might be surprised.

It is important to remember, too, that people who milk or “take advantage” of being sick for whatever reasons – attention, pity, sympathy, meds – give ALL of us “spoonies” and “rheum mates” a bad name. This is how stereotypes happen. Food for thought.

If I sound harsh, it is only because I am passionate about this for MYSELF. I do not judge anyone because everyone is in different situations. Some people may need to use crutches or a cane just to garner some sympathy or understanding from their loved ones — and I’m very lucky to not be in that situation. Some people legitmaly do need those assistive devices every single day and I acknowledge that. I am lucky that I don’t need them yet and I hope I never will. However, if I do someday, I will be sure to only use them when I absolutely need to (just like I do with my handicap parking pass) and not just because they are there. I will always first and foremost rely on myself and what I need and want. And I will never, ever let my illness stop me from living my life as best I can, the way I want to, in whatever darn shoes I desire. And that’s just me. I vow right now to never use my illness as a crutch (pardon the pun) and I hope some of you will realize that you don’t have to, either.

Please, share your story – this is a judgment free zone. I mean, I’m sure we’ve all maybe done this at a point to a certain extent but when you’re chronically letting your illness overtake your life or you are milking it for one reason or another that’s when it gets to be a problem. So, be honest: Do you ever milk your illness for any reason? I used to in school for a day off or an excused tardy here or there, haha, but that’s as far as it went. Do you ever use a “prop” (for lack of a better term) when you do not really need it, to get your point across? And, hey, if you think I’m being ridiculous, please share that, too! This space is all about starting conversations and opening up lines of dialogue. Please, leave a Comment.

Stay Well & Be Authentic,

Ashley Boynes-Shuck

What’s YOUR weapon against arthritis?

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6 thoughts on “Defined by an Illness? Milking Your Sickness? That’s Not My Cup of Tea! by Ashley Boynes-Shuck

  1. I’m right there with you. I joke to my friends that the more dressed up I am (at least when it comes to “work clothes”), the worse I probably feel. It’s a coping mechanism, like “hopefully if I wear a suit, none of my students will look past that and see how worn out I am.” I think we all spend a lot of time thinking strategically about our image and our identity, whether we realize it or not. I happen to think that the sore feet that result from a night in heels is no more destructive than the sense of helplessness that can result when everyone around you thinks of you as “the cripple.” It’s about finding a balance and being strategic. You don’t have to reveal *everything* to *everyone*!

  2. Nope, I don’t milk it here. Milk tends to bother me physically :-) Your post applies to our society as a whole. What bothered me most is the judgemental attitude of the fellow raer. She should know better in my opinion then judge another with chronic illness. The beauty of being human at all is our individuality and that is what all of this boils down to in my opinion. And why is it that we can’t accept individuality whether it is within the confines of chronic illness, nationality, color, race, etc. etc. I find this condescending views rather bothersome on all fronts. I also love to try and look my best. I also try to avoid the assistive devices and so far I have even refused the handicap sticker (even though my doc feels otherwise). This is my right and I will march to my own music and do my own dance through life in celebration of who I am and what I love and believe in. Geeezz, I would have hoped that a fellow raer would have had more empathy and appreciation for your celebration of life and your way of dealing with your illness but alas…I suppose this is just part of the human frailty after all.

  3. I definitely agree with you. I had a friend who literally told EVERYONE about her illness as soon as she met them. While you shouldn’t have to hide your illness (because, like you said, it’s definitely a huge part of life), you shouldn’t us…e it as an excuse to use people or be nasty to them. I need to work on findnig a balance and knowing when to reveal my illnesses. I usually don’t tell anyone because I get tired of the patronizing/insensitive comments. Usually when I’m feeling my worst, I try to dress up so I at least look good…except I haven’t been doing that too much lately. I really need to get back to it! On the other hand, it really makes me mad when someone says something nasty like “your walking so slowly” as I climb the stairs. I just want to sceam “If only you knew how much pain I’m in and what a challenge it is to walk up these stairs!” It’s hard to know what to do. Having chronic illnesses really can make it harder than it is for everyone else, but I never want to use it as an excuse. It’s hard to admit when you just can’t do something and have to tell people that you need a break. You would think that everyone with an invisible chronic illness would go through this same struggle, but some people really use their illness as a reason to be nasty to everyone and aren’t even sympathic/ nice to fellow sufferers. Luckily, I’ve found a good friend who also has an invisible illness and understands the when/if to reveal conflict too.

  4. Hi Ashley!

    I only just came across your blog for the first time today… it seems we have many common readers and online friends. I write a blog called Loving With Chronic Illness, where I focus on living and loving well with illness (I have Spondylitis & Fibromyalgia). I LOVE your outlook and definitely connect with a lot of what you’re saying in this post. I’d say my “thing” is also vanity, and I think being chronically ill has only fueled my desire to look well. I try everything I can to combat the effects of my illnesses and the cocktail of medications I’m on. It helps me feel strong and focus on more than my health.

    My jaw dropped when I read about your experience at the recent arthritis event. How could someone push you to look unwell when the point is THRIVING? I’m so proud of what you said to her, and whether she knows it or not, I think you taught her something important that day. Of course everyone chooses to live their lives differently, but your perspective is a crucial one for everyone to hear. Thank you for your positive spirit and the reminder that we’re all SO much more than our health conditions.

    All my best,
    Maya (www.lovingwithchronicillness.blogspot.com)

  5. Thank you so much for posting this. I’m in my early 20s and only recently got acknowledgement for the pain that I’ve been in for the past 13 years. Only now do they want to call it arthritis. I only got confirmation this week! I don’t know how to put this without being completely honest, so I’ll just say it. I have wanted to milk it a bit. I don’t intentionally walk with a limp, but if it hurts I won’t try to hide it. If people ask me, I’ll tell them. I guess I haven’t fully accepted it and trying to make sense of this. I’m struggling to not let this become me. So this was really helpful. I’ll bookmark it and have another read in 6 months time.

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