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You are here: Home / Health / Living with an Invisible Illness, Part 2

Living with an Invisible Illness, Part 2

April 16, 2016

Living with an Invisible Illness, Part 2

If someone told me that one day I’d be writing about the Real Housewives of Beverly Hills on my website, I would have told them they were crazy. But here I am: not to admit my guilty pleasure (although that cat is now out of the bag), but to discuss a topic that happens to be getting some attention in the reality TV world: invisible chronic illness.

Anyone who’s been following the RHOBH knows that one of the major “storylines” from this season has been Yolanda Hadid’s (formerly Yolanda Foster, at the time of filming) battle with chronic Lyme Disease. Although Lyme Disease is not an autoimmune disease, they can share a lot of similar symptoms: joint and muscle pain, brain fog, extreme fatigue, and flu-like symptoms, for example (not to mention more longterm complications), all while perhaps the patient “looks fine” on the outside. So needless to say, I felt a strong connection to Yolanda while witnessing her struggle. Although my battle is different (I have Crohn’s disease, which has branched off to also include symptoms of fibromyalgia, chronic fatigue, eczema, and other ailments), at the end of the day, I felt like I was watching myself (minus, of course, the beautiful penthouse apartment and the on-call “health advocate”). The battle of fighting debilitating symptoms is something I’ve known all too well, and as much as I hate to see anyone suffering, to see someone like Yolanda Hadid representing an “invisible illness” on TV was strangely comforting. On, what I would call, an unlikely platform, there was someone providing a voice for the rest of us often voiceless sufferers.

But I became quite shocked as the story started to unfold. Viewers watched as Yolanda’s fellow cast mates started to question her illness. The term “Munchausen” came up quite a bit, as did accusations of a misdiagnosis or even depression being the cause of her seemingly mysterious symptoms. Viewers watched as Yolanda endured a seven-hour surgery to have had her severely leaking breast implants removed, and it doesn’t take a rocket scientist to know that the toxins that had leaked from her implants probably had a majorly negative impact on her health. But that doesn’t necessarily mean she doesn’t have Lyme’s or that she has been faking illness to get attention (although it’s not uncommon to be misdiagnosed since these type of symptoms are vague and mimic so many other conditions). The truth is, illness is often an accumulation of triggers, and it’s often difficult to pinpoint exactly what all those triggers are. At the end of day, many of us who are chronically ill are always searching for answers, regardless of what diagnoses (or lack of diagnoses) we receive, because the bottom line is we are suffering, and we simply want to get better. Still, in Yolanda’s case, many outsiders felt the need to criticize and pose doubt, and before you could say Munchausen three times fast, the rumors seemed to be everywhere: on the show, in the media, on social media threads. It’s funny how may people have an opinion when they are not walking in the shoes (or should I say, laying in the bed) of the person who is ill.

I’ve written about my take on Living with an Invisible Illness with the hope of helping others understand this very misunderstood situation, and it’s clear more than ever that a discussion needs to be had. It’s hard enough to live with an illness that takes everything away from you — often your career, your relationships, your entire life — but to have outsiders question your motives (and your sanity!) is heartbreaking on a whole new level.

How anyone could question another person’s illness is beyond me, but I have to wonder if perhaps it’s because all of this comes upon the heels of a storyline on another Housewives series (this time, the Real Housewives of Orange County), where alleged con-man Brooks Ayers allegedly faked a cancer diagnosis in order to allegedly gain sympathy from those around him (did I mention all this was alleged?). So now that we’ve seen it can happen, I can see why viewers are on alert. Still, most of us know that the Ayers stunt is the exception, not the rule. There are millions of people suffering from chronic, longterm illness, and the idea that we now might have to prove ourselves or answer to outsiders is rather ludicrous (thanks a lot, Brooks!).

As someone who battles chronic illness on a daily basis, I could easily get offended by this trend. But I also have to take a step back and look at it from an outsider’s perspective: if one has never battled a chronic illness themselves, how could he or she possibly understand? This is where awareness and education play an important role. Although some viewers didn’t find watching Yolanda’s illness very “entertaining,” I’m very grateful that Yolanda decided to stay on the show and share her battle. Of course, I can relate to it on a very personal level, and suddenly my guilty pleasure show has a little substance, a kind of substance that might educate a few people. Even if people are questioning Yolanda’s illness, my illness, or anybody’s illness — hey, at least they’re talking about it. And that’s always the first step toward educating and (hopefully) encouraging compassion in others.

For anyone questioning experiences like Yolanda’s, let’s clear up a few myths about those of us who suffer from chronic illness:

• Invisible Illness Myth #1: That person looks fine, so they can’t be that sick.

• Reality: There is a wide spectrum of invisible illnesses, including everything from diabetes and cancer to a seemingly endless list of autoimmune diseases. It’s impossible to know what kind of battle is raging within another person’s body by just looking at them. One can look perfectly fine on the outside, yet be battling pain, extreme exhaustion, or other debilitating and life-altering (and sometimes life threatening) symptoms. This situation is more common than you might think, and it’s important to remember this before writing someone off as a hypochondriac, or even worse, a liar.

 

• Invisible Illness Myth #2: That person is faking or exaggerating their illness to gain sympathy or get attention.

• Reality: Although a short-term illness might garner some sympathy and attention, the opposite is usually true for those suffering from longterm illness. Good people will always rally around those going through a tough time, but if that tough time stretches into years, that attention fades. It’s not because those people are any less supportive; it’s just that everyone has their own lives to live, and longterm illness is not only draining for the patient, but also for the supporters. It’s just the nature of the beast. I can personally testify to the fact that living with a longterm illness makes you feel terribly lonely at times. The longer your illness goes on, the more your relationships suffer, and the less interaction you often have with others. Even with the support of your closest loved ones, it’s not uncommon to feel more and more disconnected with the world. Many people with chronic illness once lived very active lives, so to lose all of that is often devastating. Most people would not choose this life. And typically, patients are not looking for pity, but we are looking for understanding, a sense of compassion, and the same human respect you’d give to anyone else.

 

• Invisible Illness Myth #3: Funny how that person made it to one event, but then didn’t feel well enough to attend the next event. How can you feel okay one minute and sick the next?

• Reality: This is very typical of someone living with a chronic illness. We have good moments and bad moments. Symptoms are ever-changing and unpredictable, so when we experience a spurt of energy, we will probably do our best to take advantage of that. On my worst days, I’ve been completely debilitated and bedridden. On my best days, I might be able to handle one or two routine activities, but any more than that will result in the need for days of “recovery” after (this usually translates to bed rest). Being able to participate in life events usually means planning ahead and reserving our energy when needed. Chances are, we will “run out of gas” at some point, so unfortunately, this translates to having to choose one event over another a lot of the time. It’s not that I don’t want to be there; it’s that my body will only allow me to do so much.

 

Finally, I think it’s interesting to note that Yolanda Hadid had a seemingly lovely life: a beautiful family, a gorgeous home, a successful career behind her, wealth, and an active lifestyle. It’s true, we would eventually learn that her marriage was in trouble, but there’s a good chance some of that came as a result of an illness that stole her ability to lead a normal life (and ultimately, it’s a complicated subject that’s not really any of our business). Regardless, Yolanda is an example of the fact that you can have a (seemingly) perfect life, but when a health crisis strikes, all of that falls to the wayside. In the end, health — particularly illness — is the common denominator among all of us, and there’s no amount of money, fame, or power that can change that. Illness does not discriminate. It can strike (and destroy) anyone. It is both the fortunate and unfortunate force that universally connects us, and in some ways, acts as a powerful “equalizer” in an otherwise inequitable world.

So instead of being quick to judge each other, let’s try to understand one another and show some compassion, because we all know this could happen to any one of us or to anyone we love. To learn more about what it’s like to live with an invisible illness, I encourage you to check out Living with an Invisible Illness, Part 1.

 

Be Kind, Have Compassion

 

 

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#invisibledisabilitiesweek : This is me about thre #invisibledisabilitiesweek : This is me about three years ago at at a family party (here with my Auntie Agnes 💕). I woke up that morning and got ready, put on some makeup and had some color in my cheeks, went to the party and pretended everything was just fine. What nobody knew that day was that I was so weak and sick, I was secretly holding myself up by leaning on tables and chairs, so I could stand up and try to hold a normal conversation. The rest of the time, I found excuses to sit down and hoped that no one would notice how lousy I felt. My body had started experiencing a new Crohn’s flare, and I would end up in the hospital just a few days later. Just a few weeks after that, I’d end up in surgery and would get my ileostomy because we’d run out of options, and it was my only hope for survival (second pic was taken two days after surgery).
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But on this day, nobody knew. I looked perfectly “normal.” This is how it is with invisible illness and invisible disability. In fact, every day is like this when living with chronic illness - experiencing ongoing symptoms of pain, weakness, and malaise that no one else can see.
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We don’t share these stories because we are looking for pity or sympathy. We share for the purpose of awareness, to help others understand why that person who “looks fine” may need extra accommodations, medications, a disabled placard, or simply extra time to accomplish everyday tasks.
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I still get self conscious when parking in a disabled spot, no matter how awful I might be feeling in that moment, for fear of judgement from those who can’t see my symptoms. 🙈 Please remember that we have no idea what someone else is going through simply by looking at them. Please remember to be kind!
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It’s Invisible Disabilities Week, so I’ll be sharing more in my stories! 
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#invisibledisabilityawareness  #invisibledisability #crohns #crohnscolitis #ibd #ostomy #ileostomy #ostomate #nocolonstillrollin #stomalife 
#chronicillness #invisibleillness #migraine #spoonie #spooniewarrior #spoonielife #chronicillnesswarrior #migraine #cfs #autoimmunedisease #autoimmune #autoimmunewarrior #chronicpain #fatigue #pain #anxiety #chronicillnessawareness
Happy Ostomy Awareness Day! As always, I’m very Happy Ostomy Awareness Day! As always, I’m very grateful for this amazing little medical device which gave me a chance at life again. 🙏🏻

“On the other side of a storm is the strength that comes from having navigated through it. Raise your sail and begin.” ― Gregory S. Williams

#OstomyDay2020 #OstomyAwarenessDay #ostomyawarenessday2020 #worldostomyday #OstomiesAreLifesavers #crohns #crohnscolitis #ibd #ostomy #ileostomy #ostomate #nocolonstillrollin #stomalife #babeswithbags #chronicillness #invisibleillness #spoonie #spooniewarrior #spoonielife #chronicillnesswarrior #invisibledisability #autoimmunedisease #autoimmune #autoimmunewarrior #chronicillnessawareness
I have removed my original Blackout Tuesday post i I have removed my original Blackout Tuesday post in order to avoid confusion and not hinder the BLM movement. To clarify, I’ll be continuing to mute my personal posts and will post only to #amplifymelanatedvoices. .
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Photo/graphic from @unitedwedream.
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More info in stories. 🖤
Many ways to show our support, even from those of Many ways to show our support, even from those of us who are mostly housebound or living with chronic illness. More in stories. .
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2nd photo/graphic from @mireillecharper. 🙏🏻
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For more information, including info on where to donate, click on my LINK IN BIO. More helpful sources are also tagged in photo #2.
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#blacklivesmatter #justiceforgeorgefloyd #justiceforahmaud #justiceforbreonnataylor #whiteprivelege
Celebrating birthdays social-distancing-style. Tha Celebrating birthdays social-distancing-style. Thanks to these lovely ladies for a perfect gathering on the lawn today (six feet apart, of course, while wearing our masks). Thank you @enza.pirozzi.73, @deanneragusa, @jennjennwessels, @dr._pirozzi and my fellow birthday girl, @tiff_nk. Love you all! ❤️
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#quarantine #socialdistancing #birthday #lawnparty #covid19 #coronavirus #friends #lifelongfriends #birthdayfun #sundayfunday #adventuresofasickchick
Carrot muffins straight out of the oven! Easter ma Carrot muffins straight out of the oven! Easter may not be the same this year, but it doesn’t mean we can’t enjoy a few comforting traditions. 🥕🥕🥕
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I find that baking can be rather cathartic and help ease anxiety, especially during a time like this. Also, you’ll have something yummy to eat when you’re done. 😋
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The recipe for these Paleo Carrot Muffins can found at my #linkinbio or directly at http://adventuresofasickchick.com/paleo-carrot-muffins/.
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#paleo #carrot #carrotmuffins #easter #easterdessert #paleorecipe #recipes #primal #grainfree #glutenfree #dairyfree #nutfree #refinedsugarfree #baking #easterbaking #crohns #ibd #paleolife #ostomylife #quarantine #quarantinebaking #quarantinemuffins #quarantineeaster #adventuresofasickchick
Hello friends! It’s been a while since I’ve po Hello friends! It’s been a while since I’ve posted, and I think it’s because I’ve been battling a lot of anxiety lately. While self-isolation is nothing new for me (thanks, Crohn’s! 👍😂), there’s the new added stress of being in the “high-risk” category and trying to avoid exposure to the virus, all while scrambling to find my regular necessities, food and medical supplies during this time (not just for myself but for my other high-risk family members). My symptoms are exacerbated with stress, and the last thing I want is to end up in the hospital and take up a bed that someone else will need. Meanwhile, for some reason, I’ve been more busy than ever (oh, how I long to be one of those bored people who make and post TikTok videos all day 😩).
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But whenever I’m starting to feel overwhelmed, I’m able to gain some perspective when I think about all the healthcare workers and on the front lines, as well as all the essential workers (first responders, and grocery store workers, delivery workers, etc.) who are working feverishly to keep us all safe, healthy, and functioning as normally as possible. My thanks goes out to all of you in those categories, and well as to my friends and family who have offered us help with shopping and groceries during this time.
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And I’m also grateful to those of you who are not necessarily high-risk but are taking all of this seriously by social distancing and sheltering in place. As a chronic illness warrior, I thank you!
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Prayers and love to everyone struggling with anxiety or trying to make sense of this pandemic. The unknown is scary, but I find comfort in knowing there are so many caring people out there and the fact that we’re all in this together. 🙏🏻❤️
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#corona #covid_19 #socialdistancing #shelterinplace #selfisolation #quarantine #selfquarantine #highriskcovid19 #highrisk #chronicillness #crohns #ibd #ostomy #migraines #anxiety #chronicillnesswarrior #autoimmunedisease #autoimmunewarrior #stayhome #staysafe #adventuresofasickchick
Who’s in the mood for chocolate dipped strawberr Who’s in the mood for chocolate dipped strawberries? 🙋🏻‍♀️
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These are so easy to make and require only three ingredients: chocolate, coconut oil and of course, strawberries! .
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I especially love using @equalexchange chocolate chips because they are allergen-friendly: soy-free and dairy-free plus organic and fair trade (not to mention immensely delicious)! Bonus: this recipe is both Paleo and vegan (I.e. sure to please just about everyone). ❤️
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Check out the recipe for Chocolate Dipped Strawberries via my #linkinbio (click and scroll down) or directly at http://adventuresofasickchick.com/chocolate-dipped-strawberries-paleo-and/. 🍫🍓🥥
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#strawberries #chocolatecoveredstrawberries #chocolate #paleo #vegan #valentine #valentinesday #valentinetreats #sweettreats #dessert #allergenfriendly #chocolatedippedstrawberries #adventuresofasickchick
It’s #NationalPeanutButterDay, so naturally I’ It’s #NationalPeanutButterDay, so naturally I’m sharing my *alternative* to peanut butter cookies: Paleo and vegan-friendly Sunbutter Cookies!
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These delicious treats are about as allergen-friendly as it gets — nut-free, grain-free, egg-free, dairy-free, coconut-free, and refined sugar-free. But you’d never know it because they’re super yummy! They’re always a hit with all my non-Paleo friends and family. .
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Check out the easy recipe #ontheblog via my #linkinbio or directly at http://adventuresofasickchick.com/sunbutter-cookies-paleo-vegan/. .
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#sunbutter #sunflowerseedbutter #cookies #paleo #primal #glutenfree #grainfree #nutfree #eggfree #dairyfree #refinedsugarfree #recipe #easyrecipe #paleorecipes #vegan #plantbased #veganrecipe #allergenfriendly #foodallergies #foodporn #paleodesserts #paleolife #crohns #ibd #chronicillness #sunbuttercookies #adventuresofasickchick
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