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5 Truths to Remember If You're Feeling Guilty About Your Chronic Illness

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If you are chronically ill, chances are that you feel (or have felt in the past) guilty about the fact that you’re sick. You can find yourself doubting whether you really are sick because of the way people treat you. You can feel as though you are having a negative impact on the people you love because you need more care than others, or you feel you are causing them to miss out on something. Or you can just feel guilty and not be able to explain why.

The important thing to remember is that it is totally natural. And it is OK to feel that way. Guilt is a perfectly normal and human emotion, and if addressed properly, I think we can use it to change our perspective on things.

If you, or someone you know, struggles with feeling guilty about their illness, as I do and have many times in the past, here are five important truths to remember on your chronic illness journey.

1. It’s not your fault.

While it’s true that people who don’t understand the challenges you face can make you feel like your illness is your fault, it is absolutely not. You did not ask to live life this way, and allowing people to make you feel that way gives them all the power. Don’t let that happen.

2. You’re not holding people back the way you think you are.

Because your abilities may be different than others’, it’s natural that you would feel this way. If you can’t do the things your friend/family member/partner wants to do, that is OK. Everyone has their limitations. The key is to be creative! For example, if you can’t go outside, bring the outside in! Build a blanket fort and eat sandwiches on the floor! Who cares if it looks a little strange, you’re having fun, and that’s the main thing! And remember — the people you love spend time with you because they want to, not because they have to.

3. The people who love you see through the illnesses and see you for you.

I can’t reiterate this enough. No matter how lost you feel, no matter how much you feel your illness has taken over, you are still a person. The people who love you can still see that, even if you find it hard. So don’t feel guilty about spending time with them when you’re having a hard day. They choose to spend time with you because they love the person you are, not the illnesses you have (though I’m sure they love all parts of you).

4. The people who mind don’t matter, and the people who matter don’t mind.

This is one of the hardest, but most important things to remember. If someone has a problem with the fact that you’re ill, ignore it. Don’t let it make you feel guilty. Life is too short to hold onto things like that, and it’s best to let it go, no matter how hard that is. The people who matter don’t mind that you’re sick, that you have to cancel meetings last minute or you can’t get out somewhere. That’s because they understand what you’re going through. And they love you all the same. Those are the people to hold onto, not the people who get angry at things beyond your control. Don’t let that bring you down.

5. It’s not a quick fix, but that’s OK.

Feeling guilty over your illness isn’t something that will go away overnight. It is something to work towards accepting. While it’s tough, it is also so rewarding to come to a place of acceptance, because to some degree, your illness is out of your control. Everyone feels guilty about things from time to time, but try hard not to let it consume you. Everyone is different, but more people than you would realize struggle with feeling guilty.

Just remember you’re not alone.

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7 Wishes for Myself in 2017 as a Person With Chronic Illness

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There was a certain relief for me as 2016 drew to an end after struggling with chronic illness all year. Like the closing of the curtains on a play, where the stage lights dim and house lights come on. The actors celebrate their performances, and there’s a feeling of relief and happiness that everything went without a hitch.

Sound vaguely familiar?

For some of us, 2016 may have felt like an outstanding performance or perhaps more of an attempt at a performance — with an audience we know full well, stacked full of our greatest supporters and critics. We bravely put on an act, because the alternative was pretty scary; there isn’t a script! Life doesn’t come with a script — it’s all a bit impromptu really.

To make sure 2017 isn’t a repeat “performance,” I want to find the inspiration and motivation to go impromptu — bringing about changes that give me the confidence to be more in control. In my experience, traditional New Year’s resolutions don’t stand the test of time, especially when I’m also battling a chronic illness like ME/CFS.

With respectful reflection for 2016, I wish to acknowledge what I did in 2016:

I stopped and farewelled the unwanted and unhelpful.

I stopped associating with those who drained me of what little energy I had.

I stopped feeling guilty and made peace with my pain.

I stopped living behind what others identify as someone with a chronic illness.

I stopped feeling ashamed that I could smile while in pain.

I stopped grieving for that which I had lost — my independence, my career, my friends…

I stopped looking for answers — the people, places or events to blame for my illness.

I stopped trying to be superwoman and accommodating everyone and everything in my day.

I started nurturing my body, focusing on fueling it with energy, love and rest — all the while allowing myself the space to be me. In stopping, the pain subsided, the dark clouds lifted and I started seeing what was holding me back: self-love.

I have more energy, and it’s with this energy that I’m inspired by to move forward into 2017 with even more self-love.

Here’s what I wish for in 2017:

1. I wish to release the stress in my life (AKA the unwanted and unhelpful).

2. I will look more deeply, be more mindful and explore my thoughts further.

3. I will be more present, so I can better learn and understand where my doubts, fears, guilt and limits come from so I can develop ways to move forward with that which is difficult and annoying to deal with.

4. I will become my own best advocate and learn to speak about my chronic illness openly and clearly, reminding myself that others aren’t able to read my mind when I am in pain, and what they hear isn’t always what I’m saying.

5. I will focus on what I can do, plan it well and concentrate on how I can do it, allowing myself the space to progress forward steadily, without overcommitting and overexerting myself.

6. I will continue to choose to spend time with those who matter and remain committed to those relationships that fill me up and reward me with good feelings, fun times and memories that inspire and warm the heart.

7. I will allow myself to celebrate minor achievements, and often!

You see, in 2017 I deserve to live my life, albeit a life within the limits of this illness, with its timely pain reminders and the random need for rest and sleep. I am so much more than my illness. This is my body and who I am — regardless.

It is still a life and a life worth living — every minute of it. My very own impromptu performance filled with happiness, contentment and endless hope for the future.

If this impromptu performance leaves you inspired, then I dare you to laugh and laugh out loud — don’t hide behind the facade that “if I’m seen to be happy, I must be well, so I must be sad and miserable.”

Please try not to compare your illness against those who have no illness — there simply is no comparison, just a life full of personal rewards for all, which leave all of our audiences inspired and motivated to perhaps do the same.

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What People Don't Understand About Chronic Illnesses During Winter

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I live in Colombia, which is very close to the Equator, so we don’t have seasons. Depending on the altitude, there are a variety of climates that stay relatively stable throughout the year (the exceptions being the rainy and dry seasons).

I’m currently in Europe for vacation. I’ve been to Fatima, Madrid, Salamanca and, currently, I’m in Avila. It’s a beautiful town with gorgeous walls that surround the city center. Most importantly (for me at least), it’s the native home of my favorite saint of all time: Saint Therese of Avila. Long story short, spirituality is very important in my life, since I’m currently going through a major depressive episode. I felt I needed to come to my saint’s town as part of my recovery process.

Oh, I’d like to share two small, tiny, little details. First, I have fibromyalgiaasthma, some remains of a reactive arthritis I got a month ago, major depression and anxiety. And second, it’s winter in Europe. You can see where I’m going, right?

I’m not going to talk about the depression and anxiety in the winter time. That’s a topic for another story. Instead, I’m going to talk about physical and chronic illnesses during the winter, which is new for me but a reality for many, many people around the world. 

Let’s start with the fact that if you have a chronic illness, it’s hard enough to travel because of the physical toll it can have on you. Don’t get me wrong. I’m not ungrateful. I love traveling, and I’ve been lucky enough to visit some amazing places. I believe going to Avila and Fatima during such a hard time in my life has been good for my soul. I’m absolutely thankful for this trip, and I will travel in any climate just for the love of getting to know new places or going back to cities that stole my heart.

But it’s hard, people. You’re chronically fatigued, so, therefore, all you want to do is sleep. And most journeys require you (in general) to wake up early and stay up late, walking and touring around. It can be exhausting for people with no conditions at all! Now imagine those of us who have conditions that make you feel tired all the time. Fun. There are long walks, stairs in museums or churches and your jet lag certainly isn’t helping, either.

But let’s focus on winter, shall we? You don’t want to get sick (or in our cases, sicker), so you have to wear a billion layers. Thermal underwear, special socks, pants, a shirt, sweater, winter coat, two sets of gloves, a hat and a scarf. You can’t even bend your joints!

Fibromyalgia problem #1: Your extremities swell up. Therefore, all of this clothing (if it fits) gets way too tight and makes it even more painful.

Asthma problem #1: You’re supposed to wear a scarf thicker than a concrete wall in order for no cold air to get into your lungs because it makes you sick. But you’re already short of breath because of the weather. Therefore, you can’t breathe and you breathe even less with a huge scarf covering your nose and mouth. So you lower it in order to breathe and then cold air gets in, which is bad. And, well, I don’t need to explain this vicious circle, do I?

I’m 22 years old, so everyone expects me to be happy, full of energy and active. And I’m not energetic because of all of the things I previously explained. Well, at least I’m not active all the time, and I’m even less so when it’s cold outside.

So go slower, make some stops and constantly enter to places where there’s heat to breathe better. Suggest to take a taxi or a bus. And as considerate as people may be, some just won’t get it because you may look like a “lazy” young woman who doesn’t want to walk and see new places. They don’t get that cold temperatures can lead to pain in your joints and muscles and can collapse your lungs.

And yes, I know there are inhalers and painkillers, but it’s not enough. Plus, it’s absolutely frustrating to be in this limbo where you aren’t healthy like other 22-year-old tourists, but your disability isn’t visible to others.

For all of you who have fibromyalgia or arthritis (or both) and live in places with seasons, I’m very empathetic and admire all the courage you have to manage your symptoms and live your daily life in such cold weather for whole months out of the year.

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5 Things I Do Because of Chronic Illness That You May Not Realize

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I live with several chronic illnesses and they make certain daily tasks difficult to complete. Over the past six years I have developed ways to make those daily tasks easier so that I can continue to live as “normally” as possible. I guess you could call them chronic illness “hacks,” but most of them you might not even realize I’m doing because of chronic illness.

If you have a chronic illness, let me know if you’ve done any of things too. If you have a friend or family member with a chronic illness, keep an eye out for these subtle ways that their “invisible” illness becomes just a bit more visible.

1. I have short hair. I wear my hair in an angled bob, not because I want to be stylish (though it does sometimes have that effect), but because it is easy to maintain and takes five minutes to style. Showers are a lot less tiring without having to wash hair that comes to the middle of my back.

2. I’m a natural beauty guru. I have a lot of chemical sensitivities and struggle with severe acne caused by polycystic ovary syndrome. I realized that traditional beauty and skincare products were putting an unneeded burden on my body and when I read reports that said that most makeup contains endocrine (hormone) disruptors, that was the last straw. I completely overhauled my makeup bag and skincare products. I use organic, all-natural products and though it hasn’t completely cured my acne, I’ll never go back.

3. I have a bar stool in my bathroom. At first glance it doesn’t seem out of place. In fact, it just seems like a convenient place to set your hair dryer or makeup bag since there isn’t a lot of counter space. Well, I fooled you, didn’t I? I actually have the bar stool there to help me get out of the shower safely and as a place to sit while I do my hair and makeup. I have another bar stool in the kitchen so that I can sit while I cook too.

4. I live in an apartment. It’s not exactly strange for me to live in an apartment. My husband and I recently graduated from college and we can’t exactly afford to buy a house. But we could have chosen to rent a house instead of an apartment. We chose the apartment for a very calculated reason. I need to be able to call someone when faucets leak or drains clog or something needs to be repaired. I also need walks to be shoveled and parking lots to be plowed in the winter and our apartment complex comes with those perks.

5. I’m a minimalist. Yes, minimalism and Scandinavian design seem to be a huge trend right now, but I discovered minimalism a long time ago, and I wasn’t trying to be trendy. Minimalism may be the most life-changing decision that a person with chronic illness can make. It makes cleaning easier, it makes finding things in the midst of brain fog easier, and it keeps anxiety to a minimum. I can deep clean my entire house in 30 minutes because there aren’t a lot of surfaces to dust, knick knacks to move, or clutter to put away. People either love or hate my decorating style. What they don’t realize that it is more of a coping mechanism than a “style” and it makes my life so much simpler.

These are just a few of the things I do to make my days a bit more manageable. The reasons for most of them aren’t obvious to the casual observer, but that’s OK. Chronic illness is a huge part of my life, but there are ways to manage it that can mask the role it plays just a little bit — and I’m all for that.

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The Time I Got Stuck in My Sweater While Changing Into a Hospital Gown

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I’ve never been good with needles… or having “normal” public experiences. But as they say, life is better when you’re laughing!

Arriving at the hospital, as usual, the first thing they did was pop a cannula in my arm. It was just inside my elbow — rendering my arm completely useless and my elbow unable to bend for fear of ripping out the needle and gushing blood all over the floor and walls like a scene from a horror film. I was then directed to go for a chest X-ray all the way across the hospital, so off I went, babying my arm as though any wrong move might cause it to fall off. I couldn’t even look at the cannula.

I was led to an area in the back of radiology lined with teeny tiny little yellow cubicles, each with a small bench and a door that doesn’t quite reach the floor or the ceiling. I’ll just say right here that the radiologist was a gorgeous young Australian and I wasn’t the only woman in there blushing. He handed me a gown and gestured to a cubicle. I was to take everything off from the waist up and then wait for him to come get me for my chest X-ray. No biggie, I can do this.

But the cannula was still in. How was I to get my shirt (and necklace) off without bending my arm? My bra I could do. I’ve done the great bra extraction under a sweater before, easy-peasy. But I couldn’t undo the strap in the back with only one hand. No matter, I would figure that out later.

On to step one, getting out of this sweater.

I pulled on the sleeve of my immovable IV arm, trying to pull the sweater off in an attempt to back out of it, bumping into the side of the cubicle. Space was severely limited. OK, change of plan: other arm first.

I used my un-bendable arm to grip the sleeve of my good arm, holding it tight as I began again to back out of the sweater from the other side. It wasn’t budging. I pulled harder, still not gaining much ground. I gave a violent tug and slammed myself into the side of the cubicle. Gasps were heard from the seating area across the way. A woman loudly asked me if I was all right and I responded that I was totally fine, nothing to worry about!

Clearly I was lying.

I was stood there with one arm successfully out of my sweater and the liberated sleeve flapping around my head like a wet noodle, panting heavily from the effort. The radiologist in his beautiful Aussie drawl called in the woman in the cubicle next to me — I was running out of time. I had to keep going — I had to get this thing off! How hard could it be to just take off a sweater? I tried to pull it over my head in a graceful swoop when everything suddenly became very dark and very tight. My unbendable arm was pinned straight up in the air, wedged between my head and the sweater that was now stuck around my chest, shoulders and face.

I tugged. I pulled. Did this sweater somehow get smaller?! I was trying desperately to pull it over my head to release myself from the sweater of death, sweating hard and panting like a wounded hippopotamus. The radiologist returned to knock on my door, asking me if I was all right and did I need any help? I quickly bent my knees so he couldn’t see my straight unbendable arm stuck up above the space in the door and told him that I just needed a few more minutes.

I was going to die in there. There would be no turning back. The sweater would have to be cut off of my body and I would have to ride the tube home in a hospital gown top. Even if I could bend my IV arm and risk a CSI blood-spray crime scene in an X-ray cubicle there was no way I was getting it away from my ear. I looked at the IV line to see that the tube was quickly filling with dark red blood, was it supposed to do that? I felt woozy now — I needed to sit down. No, I needed to get this sweater off of me, then I could sit down.

I pulled. I tugged. I banged into walls and turned around in circles — all with a gaping audience watching my dancing arm flailing above the cubicle door. I was like an anxiety-riddled squirrel in there — at one point I audibly pleaded with the sweater. I was sweating profusely, causing the sweater to stick to my skin and feel even more like I was being eaten by a wooly anaconda.

An X-ray isn’t worth this, abort! Abort! If the sweater wasn’t going to come off I could at least get it back on and leave with a shred of dignity.

I painstakingly worked my arm back into the flapping sleeve of the sweater, gaining inch by inch until my wrist poked through to cool, breezy freedom with the plan of then spreading my arms and forcing the sweater back down. This plan would have worked had the thing not then caught on my necklace.

Oh, this was so, so much worse. I still had my IV arm stuck up by my ear, my head was still covered in sweater, I had one breast in the sweater and one wedged under it and now my only good arm was caught, elbow bent, also around my ear. I was stuck in every sense of the word and my cannula tube was full of my own blood. There was no turning back.

I gently leaned forward toward the door, rapped it with my elbow and managed to squeak out a defeated “help” to whoever was out there. A moment of silence until a gentle rap was returned on my cubicle door as a sweet voice called out, “How can we help you, love?”

She fetched the outstandingly hot radiologist for me and brought him to my door. My arms were stuck, they would need someone from maintenance to bring a special key to let me out. The radiologist returned with a maintenance man and a nurse and the three of them opened my door and burst into laughter as he and the nurse attempted to liberate me from my sweater.

The necklace was really caught on the arm of the sweater and it was decided that the only way to get me out of it was to first remove the cannula line, but that couldn’t be done in the cubicle. Together they wrapped me in a gown and guided me, past the gawking waiting room, into the X-ray room so I could lay down on the table to make this easier for everybody. Warning me that she was doing this blind, the nurse reached into the depths of the sweater to remove the cannula without actually being able to see it. I was so grateful to have that thing out that I barely noticed the blood running down my arm and dripping onto the table. I didn’t care, I was nearly free. The radiologist and nurse unhooked my sweater from my bra and necklace and with a mighty final heave pulled it off of my head.

I lay there, half naked and panting in the gloriously cool air on the cold, hard X-ray table, freed at last from the sweater of death.

When I got back upstairs, nearly an hour later, my chemotherapy nurse asked me why my cannula had been taken out. I told her that she was bound to hear about it later and just scurried back to my chair, burying my face into my book and gearing up for a second IV to be put in again.

I’m clearly going to have to change hospitals.

Again.

Living with a chronic illness can feel terribly isolating, with the absurdities we go through so hard to explain and relate to. It wasn’t until I began to see the humor in what I was going through that my life started turning back around, and I hope that sharing stories like this, as humiliating as they are, helps you to also see the funny side of falling apart.

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What It's Like to Play 'Autoimmune Monopoly'

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I recently rounded the board again in my decades-long game of Autoimmune Monopoly. It is always a little frustrating when the Monopoly guy sends you straight to jail without letting you collect your $200. All of us work so hard at this game, enduring symptoms no one wants, trying to put together random tiles into some sort of monopoly.

What landed me in jail was my monopoly on Graves’ disease. An expert in the field of endocrinology told me with “almost absolute certainty” that I was misdiagnosed in 2010. His said I went through an acute thyroiditis at some point in the past, which explained my oddly-shaped, lumpy and “plump” thyroid but also accounted for my currently normal thyroid blood work. So, I drew from the Chance card stack, and I was sent directly to jail. I had to sell my Graves’ disease tile on the AI Monopoly board, but I get to keep the tiles in that color block that are “Goiter” and “High Blood Pressure, Rapid Heart Rate.” That stinks.

I had made some progress recently in AI Monopoly. After owning the “Oral and Genital Ulcers” and “Unexplained Acne-like Pustules” tiles for many years, I finally purchased the Behcet’s disease tile in July. Owning this monopoly has allowed me to build a few houses on this color block. The medicines I now take are helping, providing welcome relief from years of discomfort.

I also hit a monopoly on the “Celiac” block. While rounding the board in September, I picked up the “Atrophied Villi” tile and then immediately landed the “Celiac disease” tile. I had already owned the “Gastro-intestinal Upset” tile for years. Monopoly! Unfortunately, I also drew the rather obvious Chance card of “No Gluten Ever Again.” Boo.

Much like the original version of Monopoly, all of these acquisitions come with a positive and a negative. I have found some level of satisfaction in getting my autoimmune monopolies organized. Providing random tiles of symptoms with a corresponding AI Monopoly disease tile sets out a map for future treatment, disease progression, and allows the mind to rationalize past experiences and expectations for the future. For example, with my Behcet’s disease monopoly, I will likely never draw from the Community Chest card stack to “Run a Marathon,” but I might get, “Congratulations! You finished your first 5k! Collect your $50 prize!” Only time will tell.

But there is also a down side to landing an Autoimmune Monopoly. The stress that comes with knowing too much. The financial burden of tests, medicines, specialists, health insurance – not to mention the emotional burden and psychological toll each diagnosis exacts upon us… it seems the “Chance” card pile is never stocked in our favor in this game.
I still have quite a few properties that have not been organized into monopolies.

And while this worries me, I’m trying to envision myself on a beach vacation while I sit here in AI Monopoly jail with my goiter. What does your Autoimmune Monopoly board look like?

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Thinkstock photo by stelianospicture

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