Young woman is doing morning stretching in bed, rear view

Today I Wasn't Chronically Ill

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Today, I got up out of bed feeling refreshed and full of energy. It had been a long time since I felt this good! I made the bed, let the dog out and jumped in the shower. Surely, I must’ve been dreaming. But, I wasn’t. I knew I had a list of things a mile long I needed to get done. A list that included things from yesterday and the day before that I’d been too sick to do. Today would be the day I’d finally get caught up. I was positively giddy!

I got out my planner and took a long look at the day ahead. Normally I alternate physical work with rest, but not today. I wanted to get everything done and then some. I quickly cleaned our master bathroom, and after I’d made sure the dog had plenty of water and a treat, I set off for a morning of errands.

As I was pulling into the parking lot at Target, I was surprised at how crowded it already was. The disabled places were all taken, but I didn’t mind because I was feeling so good that I’d just park further back in the lot. After all, God knows I could use some exercise. I really wasn’t expecting to find any of the electric carts available, but there were several. But, because I was feeling so well, I wouldn’t need one today. Yay me! I could feel the adrenaline running through my veins as I walked through the store. I looked at the new summer handbags and clothing, wandered through the makeup aisles and ended up back in the grocery section. I was having so much fun! Was my foot starting to get numb? Naw, it had to be my imagination. Today was too good of a day for that. After a half hour of more looking around, I finally ended up in the housewares section where I picked up the ironing board that I’d come to get.

Before I headed home, I stopped by the grocery to get a few things. I needed to pick up my medicine from the in-store pharmacy, so while I was there, I’d get a little shopping done. I was going to stick to my list and hurry in and out as fast as I could. However, on the way into the store, I ran into an old family friend that I hadn’t seen in months. He’s an older man who recently lost his daughter. We must have stood there talking for ten or fifteen minutes. I could feel the blood begin to pool in my feet. My legs were so heavy and tired. But, I couldn’t tear myself away from him. I knew he was hurting and it felt good to feel as if I could be helping someone. After we had wrapped up our conversation, I started shopping. I finally made my way to the pharmacy where I had to stand in line for about 10 more minutes. After getting my meds, I hurried to the front of the store. Thankfully, I didn’t have to wait in line for very long. I quickly put my things in my car and headed home.

The 10-minute ride home gave me a bit of a rest and recharge. When I pulled into the driveway, I realized my oldest daughter was home; it would be great to see her again. She helped me put the groceries away, and we chatted for a bit. After she had left, I was headed to take a nap, but then I’d remembered the ironing board I’d bought. I had to get some ironing done. So, I set the new board up and fired up my iron. My arms were a bit sore, but I could do this! Today, I wasn’t chronically ill!

Only, I was still chronically ill; I just didn’t want to be. Ignoring my many symptoms didn’t make them magically go away. And, I didn’t follow my usual activity plan of alternating rest with activity. From my first thoughts of the day about how much I’d be able to accomplish to ignoring my body’s signals of blood pooling, weakness, and pain, I’d completely blown it. I was so mad at myself for breaking what has to be the first rule of chronic illness: Listen to your body. And, while listening to your body, really listen to what your mind is telling you. I so wanted to have an average day of being a middle-aged woman just going about a regular day like everyone else. I’d wanted it so badly that I’d convinced myself that I could do anything. Obviously, that’s not the case.

I know I will pay for today dearly. I didn’t even have that much fun. Next time, if I’m going to ignore my illness, I’d at least like to have a bit more fun. Anyone up for some hula?

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Stop Being Too Optimistic and Just Accept That I’m Sick

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Why am I constantly fooling myself? Go out today — you won’t get tired. Eat food — you won’t get sick this time even though you have every other time. Your ears won’t ring forever. Your neck doesn’t need to be popped back into place. You can take as many classes as you want. You won’t cry on for hours if you’re upset. Your face wont swell. You’ll get over it like that.

If I try too much, I feel like I’m hurting myself. If I don’t try at all, I feel like I’m falling behind because everyone else is moving forward while I am stuck.

Even though unrealistic beliefs can be positive, should we have them? Yes, I manage to get some school in, but it’s not enough for me. It’s almost like I want my body to try harder. I want it to miraculously not get sick and not pass out or get tired.

I have the support groups. I spread awareness. But in the back of my head, I wonder why can’t I do more. People want me to do more, so why can’t I fool myself and just hope one day I’ll get lucky?

Every one thinks optimism is great, but did people ever ponder that maybe too much optimism can hurt you? You can’t fix something that’s already broken. It’s the same with a person. You can’t get your hopes up that an illness will magically disappear if you ignore it. So I won’t be optimistic. I’ll still be happy, and I won’t be negative. But there is no way to make an impossible possible. So I wish the healthy portion of the world would stop being so optimistic and just accept that I’m sick.

Let’s be realistic and not make others feel bad for being sick. Would we make a healthy person feel bad for being healthy? No!

So I’m not going to be optimistic that my broken glass of a body is going to magically repair itself. I won’t sit around saying “poor me” and let it suck me dry either, but I’m not going to deny the problem is there. I’m being realistic as opposed to over-optimistic.

I beg of you — stop trying to create a miracle that doesn’t exist. Just start accepting that it’s not going to change no matter what I do. I will always be sick.

If you don’t do this, your “optimism” could cause more physical and mental damage than that was already there in the first place.

So, please stop.

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When You Tell the Sick Girl She’s Lucky Because 'At Least You're Skinny Now'

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When I was in the eighth grade, my class took a monumental trip to Washington, D.C. Monumental in that, at the age of 14, this trip marked the first taste of autonomy (however simulated) many of us had ever had. Responsible only for checking in with our chaperones at designated locations and hours throughout the day, we were free to museum-hop, site-see, or sprawl out onto D.C.’s vast blankets of grass as we saw fit.

This liberation stopped just short of reaching me, however, as I became one of four students in my class who’d contracted the 24-hour flu and was forced to instead explore the underwhelming, less-than-remarkable blankets of my hotel room.

Upon my return to school, many groans and aches later, I was greeted by a teacher of mine at the time, who noted my “impressive” weight loss. I explained to him that I had been ill, but graciously noted that I was feeling much better, to which he careened his glance and said, “Maybe you should try getting sick more often.”

I will let that sink in for you as it did for me — slowly, and with the same creeping ache of my flu-ridden muscles when asked to fight too much harm away.

A decade later, I was met with an autoimmune disorder which called for an instant and severe cutback on most aspects of my diet. At first, most days I found myself too tired to leave the house, too panicked to formulate clear thoughts, too sick to my stomach to walk very far. If I ate outside my restricted diet, I experienced a scary and immediate bundle of side effects — hives, minor (but not-so-fun) throat restriction, panic attacks, etc. After much reluctance, followed by a desperate recognition of my own medical necessity for help, I made a wide array of lifestyle shifts and treatment choices, all of which caused a notable and sudden weight loss. All this rapid change was scary, but I was determined to jump back into my own bones and move around a little. Feel bike gears shift underfoot. Dance with a boy in a sweaty, irradiated room.

Not for nothing, I grew into this shift in life, just as you grow into any other that crashes into you. I had no choice. I wasn’t thrilled, but I was dealing with it, in the feeling-very-sorry-for-myself-at-times sense that one deals with things. But I was cognizant of my mental processing, and actively making attempts to feel less sorry every day.

What I did not expect was that neck-deep into my efforts, I would also have to devise a way for others to process this information too, in order to proactively avoid discomfort, overblown sympathy, or awkwardness. You can’t just blurt out your alcohol allergy anytime someone alludes to a funny moment from their night (*guilty*). You can’t just break down your list of symptoms to a stranger who happens to be eating lunch near you (*also guilty*). But, sometimes you feel compelled to explain why you can’t eat the meal someone so thoughtfully prepared, why you can’t drink to cheer a moment someone so ardently deserved. The nature of an illness that limits your diet and social life is that all at once it is no one’s business and everyone’s business. Whether or not I offered up explanations, my sick days and meekly packed lunches had a voice of their own. And I wanted to be able to control, to some degree, what they had to say.

So after making my immune system the butt of many jokes and casual mentions, I began to hear the same line repeated back to me many times over: “Well, at least it keeps you thin.” And in those moments, I saw that line for the innocuous, well-intentioned small talk that it was meant to be. I laughed it off, played along, served my conversational due diligence. But the same creeping ache arose in a back, un-dusted corner of my self-respect.

This response may seem commonplace to you, or it may seem outrageously unheard of, but the fact remains that it has happened. More frequently than I am comfortable with or even able to comprehend. Every day we mix innocent commentary with these miniature, unintentional erosions, because something is too dark or too immeasurable for us to stomach. In truth, I think if you stare into the face of sick, of all that it means to be sick, if you look at its cage of active loss, it will melt away at your morning coffee and paralyze your day. It will remind you that loss has many cages, and that one day you will encounter some of your own. So you wrap it up, make it cute. Throw a hashtag or a chuckle or a vacant side comment at it.

We poke what we intend as air holes into the tedium and tension of communication, but holes are holes just the same. They can give just as easily as they can take away. And suddenly the infrastructure caves. Suddenly the beams of intention fall in on themselves. And in the rubble lies a culture of shrinking teenage girls hugging cold porcelain on the bathroom floor. This is a culture we create, every day, in every conversation, when we let our discomfort, rather than our compassion, take the wheel.

I am learning to keep this sadness external because I have learned that to live, female, whole-bodied, and consciously happy is to pathologically reject what we are told to feel. Outside of this rejection, we are asked to live a constant apology for our bodies. In media, in workplaces, in late night bedrooms. In offhand comments at family functions. Yet it is not this apology that silences us the most, it is the ways it has now come to disguise itself as positivity. As “health.” It is my teenaged best friend chain-smoking cigarettes while starving herself in the name of this. Fat-shaming articles rewriting themselves in the name of this. A late-night swirl of infomercials rejecting cause and praising only effect in the name of this. Diet fads and dead bodies in the name of this. This falsified idol. This cage of its own.

Somewhere a 14-year-old girl just wants to feel well again. She drinks water and sleeps and stares through plate glass at an uninterrupted world. She wonders why so many would rather her be pretty enough to look at than healthy or happy enough to hold.

And somewhere, when I’m having one of my rougher moments, when I can’t find anywhere to order lunch, or when I want to go out with friends but opt to stay in because my energy level betrays me, I stare into the bony face of what feels like a life I cannot engage with. A bed I cannot leave. A big, fat, glorious city I cannot explore. A city that would love me back in any shape I take and weight I hold, just as soon as I can rise enough to meet it.

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3 Things I Learned From Becoming an Advocate for My Chronic Illnesses

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I have been reflecting upon my journey and achievements through 2016. I do not achieve in the traditional definition of the word. I am presently too unwell to work or to study. I contribute by way of spreading awareness of our community, by reaching out and grasping the hands of my fellow “Spoonies” so we can navigate this corn maze of illness together.

I participate heavily in the remarkable new medium of guerrilla education that YouTube and social media has allowed us to foster. Perhaps this is one of my proudest accomplishments of the whole year. Yet, you cannot educate or champion a cause without spending the greater part of your time learning — and I have learned a lot this year.

1. Support can come from unexpected people, and sometimes the people you expected it from will be nowhere to be found.

If we are fortunate, as I am, to have close friends and family, we — or at least I — hope they will think us important enough to be there on the sidelines cheering for us during our biggest endeavors. Yet, when I began to raise my metaphorical voice and looked around, many of them were nowhere to be seen. And it hurt.

It hurt because I was using my personal and painful experiences to start a much-needed conversation, and it felt like they didn’t care. I felt my heart wobble and eventually break whenever I noticed them backing other causes through social media, often similar to my own, but not showing support for mine. I can’t say I expected that; I can’t say I accepted that. It hit hard.

It made me feel like the chronic illness I was experiencing wasn’t important to them, and by extension that I wasn’t important to them. It very nearly stopped me. But the feeling of having complete strangers, who were not obliged by connection to back me, begin discovering my videos, begin talking about them, and sharing them filled me with an amazement that eventually soothed that burn.

2. I learned that friendships were a lot deeper than I had ever been able to experience, and that I wasn’t different for feeling that way.

My father passed away when I was 11 years old in a violent, but quick car accident. Before this, his diagnoses of bipolar disorder, depression and schizoaffective disorder were poorly managed. My childhood and teenage years had been heavily consumed by multiple experiences that none of my peers had been through. These experiences and feelings occupied so much space in my young brain that I had little else left to identify with or bond with others over.

From childhood until I became a chronic illness advocate around age 22, my perception of friendship was shallow and incredibly lonely in comparison to how I experience friendship now. I’d felt as though I was interacting with people through the thick veil of my traumatic experiences.

Through the chronic illness and disability community, I was finally able to lift that veil. I was able to find and connect with beautiful people who’d had similar experiences as me. I felt as though I’d found a language with which to speak that finally made sense. I hadn’t previously had anyone with these similar experiences to compare, but now I was able to see that my feelings were completely valid and common because those around me had felt them, too.

In turn, this allowed me to finally open up with my friends outside of the illness and disability community — my mind was freed through writing, talking, and advocacy so I finally gained that room to grow and find things to bond with people over. I learned the true depth and beauty of real, three-dimensional friendships unhindered by that veil.

3. I still know next to nothing.

When I opened myself up to hear the stories of others in my community, I realized two things: the world is both better and worse than I thought it was; and that I will never know even a small percentage of all there is to know about almost anything.

I have heard stories of immense cruelty and oppression, but I have also seen great feats of strength and humanity. I learned that my education, which included private high school and, so far, a year of university, had fundamentally failed. There is so much more of the world that my social studies class, my history class, and even my health class just skipped right over like it wasn’t important when it was incredibly important. I know nothing, despite having thought I had a pretty good handle on my knowledge of the world beforehand.

I have also discovered so much about myself — talents I would never have known I had. Without advocacy and the chronic illness and disability community, I never would have pushed my will and opinions so far as to see how strong they really are. I would never have thought that I was even remotely good at education myself, and explaining things to others. I wouldn’t have heard how loud my metaphorical voice is, or seen how much stronger I am within a real community. I didn’t even know that I could sit down in front of a camera and film a YouTube video, or at my desk and write an article.

I knew nothing, and I never would have learned most of it if I hadn’t spoken up and become an advocate for my own chronic illness.

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The 3 Words That Can Hurt a Person With a Chronic Illness

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“You look great!” 

Those three little words can make us feel lost, duplicitous and lonely. It’s odd how being told how great you look — which everyone covets — can be hurtful to a chronically ill person like myself.

We long for people to understand that we may look great on the outside, but we’re tired of feeling sick every day on the inside. We hate the drama of it all. We would give anything not to spend another day clutching a heating pad, slugging down hot peppermint tea and praying that somehow another elixir will cure us.

They don’t know my latest fashion splurge were pajamas with a soft tie waist because the ones I had hurt my belly. We’d like them to know that one day is up then an hour later it’s a no-go. So you go back to bed and hit restart. It’s five steps forward, six steps back, crawl forward and then time for a nap.

If we could change it, we’d all fight for a place in line. But the reality is, we can’t — at least not yet. We join drugs trials and take medications that can make us even sicker. 

So how can healthy people who say “we look great” show a better understanding about what we’re going through? How can such an innocent greeting get tweaked?

Instead of saying “You look great,” try “I know you’re probably not feeling super, but your pajamas are darling.” That acknowledges our tough daily battle, but it also sends a positive message. (Like I mentioned earlier, I have very stylish pajamas and my sock collection is to be envied!) We all want to be seen and to be treated with empathy and understanding.

Please don’t stop calling us because we can’t go out. Come to our house. We miss human contact. Ask if we need anything. A small gesture is completely awesome for us.

Please call and drop by for tea and tell a good joke, or better yet, hug me and compliment me about my awesome pajamas and my fabulous socks! 

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20 People Describe What It's Like to Be In Love When You Have a Chronic Illness

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When you’re chronically ill and in a relationship, there are some things you deal with that healthy couples may not — things like having to go to doctor’s appointments instead of dinner with friends, deciding who will do household chores and discovering how to have fun together without spending too much energy. It isn’t always easy, to say the least.

We asked our Mighty community what it’s like to be in love when you have a chronic illness. As their answers reveal, the ups and downs of having a chronic health condition can transform the experience of being in love in both challenging and beautiful ways.

Here’s what the community told us:

1. “It’s scary. I’m always scared that I’m a burden to my partner. I feel like I hold him back and that he’s not living how he’d like to. He’s my biggest support system and cheering section. I try my hardest to be his. We work well together but I’m always afraid that at some point it’s going to be too much and I’ll lose my Love because of my illnesses.”

2. “It’s bittersweet. Bitter because he takes care of me and all of my dogs without even second-guessing me. I feel like it’s unfair that I cannot do the same for him. He cooks, cleans, helps me get up when I can’t do it myself, and is always telling me how beautiful I am while doing everything. I feel useless. It’s sweet because of almost all the same reasons.”

3. “Exactly the same as when you don’t have a chronic illness. You are still a person with the right to love and be loved. I’m sure if it was the other way around and my partner got sick it wouldn’t make me feel any different.”

4. “Most people don’t usually understand. But once in a while you find a person who does. Two years ago I found my one. My significant other accepts me. He makes sure I get to my doctor appointments, makes sure I take my medications, makes sure I don’t just stay home and lie about. He makes me move, live, be free. Being in love while having a chronic illness is different but achievable.”

5. “Love when you have a chronic illness is a test. It’s a test of strength, a test of wills, a test of courage. Every hospital visit, every infusion, every flare, every tear, every test, every new specialists, every new medication, my fiance is there or supporting. He’s been there when the crash carts where wheeled in, he’s been there when I have had to have repeat surgeries because the first one failed, he’s held me when I was at my most sick and cheered me on when I was at my healthiest. Loving with a chronic illness is beautiful, even when my health is not.”

6.It’s choosing between the hormone therapy that manages my invisible illness or having a sex drive. It’s choosing between medical bills or romantic getaways. It’s choosing doctor’s appointments and surgeries or date nights. But, in the end, still choosing each other.”

7. “It’s a blessing and a curse. My husband and I met and married before I became ill. We were married for two weeks shy of three years when I received my diagnosis of myasthenia gravis. As much as I loved/love my husband I would have understood if he left. It’s a blessing having him by my side being supportive and concerned for me. He’s always there to help me when I need it. Then on the other hand it’s a curse. It’s a curse when I see the pain and helplessness on his face when I’m so sick that I can barely breathe. It’s a curse when I see him working so hard when he isn’t feeling well.”

8. “No better and no worse then being in love without one. But it brings its own problems. Sometimes you need someone to see beyond the mask. Even the person you love can forget how things really are… Other times it’s being the complete mess that I need to be. Letting everything out and being comforted by the man I love. Being secure enough to let my barriers down and just crumble and let him be there for me and help me get back on track again. It’s having to trust yourself to trust that they love you.”

9. “Scary, but amazing. I always feel like I’m a burden on my husband, and that he will get sick of me being sick. Then he shows up for me when I need it most, and it feels good to know that he really meant ‘in sickness and health’ and ’till death do us part.’”

10.It’s the most comforting thing I’ve ever experienced, though I do get awful feelings of guilt every now and then… I didn’t choose to be sick, but he chose to be with me, and while there is a warm security in that, I sometimes feel I’ve made him waste the prime of his life tending to me.”

11. “To be in love with a chronic illness, you have to truly love yourself and to an extent, love (or at least learned to graciously accept) that illness. You have to be able to look into the future without just blanket fear of the unknown and know that no matter what happens you will face it and find a partner who feels that way, too.”

12. “Used to be guilt and feelings of worthless and useless until I met the perfect guy for me who makes me feel the complete opposite… He knows I’ll kick ass when I can and when I’m doing that I’ll do well, but the days it’s the opposite, he does all he can to help!”

13. “It’s always having someone to fight your battles with, even if they don’t completely understand. It means never having to fight alone again.”

14. “Love is real when you have a chronic illness. You know for sure pretty quickly if it’s true love when they need to take a bottle of your urine to the doctor or put a suppository into your back passage.”

15. “Love with a chronic illness isn’t the same as without… Don’t think it is all sunshine and butterflies. It’s not. Love isn’t, but like I said, it’s real and is better.”

16. “A roller coaster. Some days they understand and everything is fine. They take care of you and love you illness and all. Then some days they are just as tired of competing with your illness as you are.”

17. “It’s incredibly hard. I have a constant battle with my body and trying to not feel like a burden due to my condition. My fiance has to reassure me. But it’s never easy and hard to not feel inadequate when you’re so limited. But he is my rock and my strength. He keeps me going and I do my best to return the love, support and patience he has shown me.”

18. “I think my illness was one of the reasons my last relationship fell apart, more specifically the way he reacted to my illness. Constantly tried to fix me when I’m not fixable, which just left me feeling like I wasn’t good enough. Tried to force ‘help’ on me that I didn’t want. Wouldn’t listen or respect my boundaries. I took one good thing away though, I learned what I will not tolerate in a relationship — romantic or platonic! No one gets to decide what happens to my body or that they know better than I do.”

19. “You love them all the more because you can recognize the sacrifices they make because of your condition.”

20. “Being in love with a chronic illness is a lot like sky diving. You jump and at first it’s terrifying, but then you learn to enjoy the ride. And if you’re with the right person, it’s having someone that fights the chronic battle with you every day.”



20 People Describe What It's Like to Be In Love When You Have a Chronic Illness
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