Sample Be Brave box featuring a coloring book and face mask.

Taylor Nadraszky Creates Be Brave Box, a Subscription Box for Chronic Illness

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Taylor Nadraszky knows what it’s like to be sick and unable to leave home. Nadraszky, 16, started Be Brave Box – a subscription box service for people living with chronic illnesses – last year, after a kidney transplant left her stuck indoors for six weeks.

“Due to being really immunosuppressed, I wasn’t allowed in busy places such as grocery stores or malls, and had to wear a mask everywhere I did go such as my hospital appointments for the first six weeks after my transplant,” Nadraszky told The Mighty. “I had a lot of free time and that’s where the idea came from.”

Following her transplant, Nadraszky spent more than four months planning Be Brave Box. “I have always loved subscription boxes,” Nadraszky said. “It always made me happy to have surprises come in the mail… I thought that there should be a subscription box specifically for people with chronic illness to brighten our days and have something fun come directly to us when we are too sick or tired to go out.”

As part of Be Brave Box’s mission to help people living with chronic illnesses, many of the items featured are made by people living with chronic illnesses. Other items, including crafts and decor, are selected because they promote positivity or are aligned with the spoon theory. Nadraszky also makes sure to include items, like reusable fabric face masks, that are staples for people living with chronic illnesses. Each box contains five items geared towards teens and adults of all genders. Each box costs $27 CAD (for U.S. and Canadian subscribers, and $29 CAD for international subscriptions), and is shipped out every other month from Canada, where Nadraszky lives.

Nadraszky hopes that Be Brave Box, which turns 1 in January, can help others secluded by illness feel less alone. “We are always thinking ‘Is someone going to judge us based on our illnesses we can’t control?’ or ‘If I push myself and get out of the house am I going to be stuck in bed for a week after because of it?’ We just want to get out and have fun without being judged, just like healthy people do.”

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When the Hardest Part of Dealing With Chronic Illness Is Other People

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For me, the hardest part of dealing with chronic illness has and will always be other people. Silly, right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost.

All of those things are heartbreaking and challenging, but fluctuate from day to day. Dealing with the general public doesn’t go away. Ever.

Even when at my very strongest mentally, I tiptoe carefully around new people or in public places. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those who are hostile, but that fear doesn’t ever quite go away.

Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear makeup, do my hair or think beyond comfort when dressing. But I look normal, right? Just your average middle-aged woman.

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It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. I look “normal.”

You can’t see my joints eating themselves.

You can’t see the muscle spasms shooting down my legs and arms.

You can’t see my kidney struggling to filter my blood.

You can’t see my heart’s third chamber cramping as it pumps life through my body.

You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine.

You can’t see my gut attacking itself.

You can’t see my lung lining puffed up and squished against my rib cage.

You can’t see any of it, but it’s there.

Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing.

For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balanced becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves.

That’s what you don’t see. That’s the bit that all but those who live with chronic illness will never see.

The payoff.

The tough bit.

I think it’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged.

I live my life expecting that letter telling me I’m not sick enough, that I don’t look ill enough to get the support that I do.

The bad bits, the pain, the struggles, all that stuff goes on privately.

When you are really sick, do you leave the house? When you are in pain and ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting?

Of course you don’t. Most people don’t. They project positivity, show only the good bits, and that’s better, right?

I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible.

I choose to fight for my life. To live.

That is, by far, the hardest battle.

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Why My Chronic Illnesses Make Me Afraid of Dating

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I’m in my 20s — the time that every sitcom highlights as the peak time to make new
friends, to date and to fall in and out of love. I keep reading articles telling me how my 20s are the time to explore, travel and figure out what I want to do with my life. They say it’s a time make mistakes, meet new people, listen to my whims and do all the things I’d like to do before I worry about things like commitment, mortgages and promotions. It’s supposed to be a simultaneously exciting and terrifying time in my life.

They got the terrifying part right anyway.

My health has been gradually deteriorating for more than two years now. I’ve been out of work for over one year. Nights out aren’t an option for me, socializing is difficult when you have a bedtime of 9:30 p.m. and more and more I feel disconnected from “normal” people my age.

My friends have been great about making sure I can still join in. Thankfully, my condition coincided with a surge in the popularity of coffee shops and brunch, but meeting new people is a lot trickier. I’ve always been happy being single, but now I feel like it’s not a choice I’ve made — it’s that dating no longer seems like an option.

Whenever I think about it, my thoughts tend to go something like this:

1. How do you meet people when you can’t leave the house? 

Seriously. People say that you need to “put yourself out there,” but when you spend a large proportion of your day inside, how do you meet new people? There isn’t exactly a lot of eligible bachelors strolling past my couch. I know what you’ll say next …

2. Have you tried online dating? 

I won’t lie to you — Tinder scares me. I’ve always liked getting to know people organically — in real life. I get that online dating works for a lot of people. I know a few happy couples who met online, and I do think it’s a great invention. It’s just that I honestly think I’m more awkward online than I am in person. I’ve considered giving it a go on several occasions, even downloading the app and setting up a profile. Then I think about how anyone I matched with would ask me questions about myself. You know, to get to know me. And a whole lot of other concerns flare up …

3. How/When do I tell them that I’m sick?

Let’s face it, “What do you do?” is definitely going to crop up in the top three “tell me about yourself” questions. Do I just say that I’m not working at the moment without explaining why? Or do I explain? My illness is such a large part of my life — it’s not something I can hide or something I should hide. But dropping it into a conversation can be extremely awkward. I’m a private person, and I know this sounds strange to say while sharing very personal articles about my illness on this website. But it’s very different to write an article for people who may be going through similar difficulties on a website devoted to those issues than it is to open up and explain it to someone that I’ve just met, because …

4. What if they reject me because of my illness? 

If your 20s are a time to be adventurous, spontaneous and fun, nothing is going to burst the bubble of potential light-hearted romance like “I have multiple invisible illnesses and mental health issues.” I honestly can’t say I would blame someone for deciding it’s too much for them. It’s a bit too much for me, only I don’t have the luxury of opting out.

5. If the illness doesn’t scare them off, what can I actually do on a date? 

I have limited energy levels, and I can only leave the house for a few hours at a time each day. This means that my best time of day is between 11 a.m. to 3 p.m. After that, my energy levels start to drop. Socializing can be very difficult for me in the evenings because I’m often extremely drained. I’m also on a strict nutrition plan, and it’s almost impossible for me to eat out in restaurants. I can’t drink (and I live in a country where “going for a drink” is a staple date option). Basically, I can meet people for coffee, (just one cup, before 2 p.m., and I’m not allowed caffeine after then) a matinee showing at the cinema or a walk (if my energy levels are good that day). There is also a significant chance that I will flare or crash and have to cancel on them at short notice. You would have to be an extremely patient person to put up with all that.

My anxiety does mean that I often escalate problems in my head, linking one concern to another in an ever-increasing list of worries. However, this is one topic that I feel validated in being troubled over. I try to be optimistic about my attitude to my illness in general, but these issues just feel so insurmountable.

If I am in a relationship, I want it to be as equals. At the moment, I feel as though I take a lot more than I can give. When you have chronic illnesses, they become the linchpin in your decision-making. Your daily activities revolve around them. It’s something I’ve accepted for myself, but I feel extremely guilty when it impacts other people.

I know there are wonderful people out there who wouldn’t care about my health issues. The people in my life now don’t, but I’m also aware they knew me before. It’s new people, people who might think of me as “the sick girl” that I’m afraid of. That’s not how I want to be seen. I know I have plenty to offer and my illness doesn’t define who I am, but I also understand it might be hard for some people to see past it.

I know that everyone, healthy or not, has moments where they’re afraid — of being lonely, of being rejected. As I try to learn how to navigate my life with chronic illness, there are many things I have to learn how to deal with. This is just one on a list of issues I have to address. I’m determined not to let this condition affect my life or to prevent me from doing anything I would like to do. I’m still learning how to accomplish that.

I like to think that the right things come into your life at the right time. I also think I need to come to terms with everything going on with my life before I include another person in it. I hope one day I’ll be brave enough to give it a go, but for now it seems like something very much out of reach.

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Lead photo by Thinkstock Images

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To the People With Dietary Restrictions I Used to Call 'High-Maintenance'

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I’m that person now.

There was a time when I didn’t understand people like me; I judged them instead. Not the allergic ones, just the “sensitive” ones. So high maintenance, I called them. So picky. So annoying! 

I’m talking about the gluten-dairy-egg-soy-yeast-sugar (etc.)-free people.

Any time these human beings join other human beings for a meal (i.e. every day), it can feel like a colossal drag for all parties involved. This is particularly true when any holiday rolls around; dietary quirks become as obnoxious and hard-to-hide as a buzzing neon sign. In many cultures, it’s the typical thing to build a mile-high plate of food, giving zero thought to the ingredients in Aunt Sue’s world famous cheesy potatoes. But when you don’t cooperate with norms, when you deviate from the ease of a buffet line, people make decisions about who you think you are, often without asking you a single question.

My humbling experience of needing to drastically restrict my own menu has challenged my prior assumptions and chipped away at my ignorance. After living as both the misinformed and the misunderstood, here are my two major take-aways concerning __-free eating:

1. If it’s irritating to watch and/or accommodate people who eat like this, it’s even more irritating to be the person who needs to eat like this.

2. Food can cause a lot of harm in the human body, and it can bring a lot of healing, too.

For the record, I didn’t join an unnecessary fad. I’m not a snobby, superior eater (unless brown rice cakes have moved up in the world). I didn’t change my diet for religious reasons. I’m not doing it to draw attention to myself, to join a movement, or to make life more difficult for the dinner host and the restaurant server (P.S. I’ll just have an ice water, please).

These days, I eat as I do because my body is sick. When I don’t eat this way, it’s even sicker. I have an incurable illness, and the only treatment is symptom management; eating this way happens to manage a few of my symptoms. Listening to my body enough to learn what it needs and what it doesn’t tolerate is smart medicine. Many people who eat __–free have picked up on this wisdom and have begun to call it what it is: Good self-care.

And, it is high maintenance. I’ll just say it: My lifestyle is inconvenient! It takes a lot of planning, work, and flexibility for me to eat the way I eat.

I’m also picky, but that’s the point. I have to be, or it doesn’t help me.

Annoying? Of course it’s annoying! I bring my own food with me like a squirrel preparing for winter. I read every label and question every friend and cook like I’m the food police. I decline dozens of invitations to try so-and-so’s latest baking recipe, which means I often choose my body’s health over someone’s thoughtful gift. And you know what? It’s OK.

I eat this way for quality of life. I eat this way for my present and for my future. I eat this way for myself, but also for my friends and family, who deserve me at my best, and who want the best for me. If this means I’ll be the buzzing neon sign in the room, well, where do I plug in?

To my fellow “high-maintenance,” “picky” and “annoying” eaters: I’m sorry I used to look down my nose at you. I wish I had asked more questions instead. We eat the way we eat for different reasons, and I respect them all. I trust we know what’s best for our own bodies and what’s harmful for them too.

If you’re a __-free food “freak,” and you wear it like a shameful stain, don’t. Instead, wave your freak flag along with me, because whether we like it or not, we’re that person at the party, the dinner, and the restaurant. Let’s not be sorry about it, OK? Let’s just know we’re worth it.

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Lead photo by Thinkstock Images

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The Phrase I Use Instead of 'New Year, New Me' as a Person With a Chronic Illness

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On December 31 as the clock strikes midnight, everybody cheers “Happy New Year!” As the door of 2016 closes, the door of 2017 opens; it’s the perfect time to reflect on past events over the last couple of years…

Two years and three months ago, instead of a dance career I went into fashion design and studied it at college until I physically couldn’t. I was unwell. I struggled. But I made it three months in. I may have been eight weeks behind everyone else, but I made it happen. I made a memories. And I made sure I made the most of it, seized the moment and captured it.

Little did I know my life/health would plummet, intensify in severity and spin completely out of control. I went from fashionista fanatic to in bed 100% of the time. PJ Princess in a blink of an eye.

Today I have been hospitalized for 10 months (and counting). I’m tube-fed and paralyzed. So much has changed. But what hasn’t changed is my willpower, my strive for perfection, and who I am. I refuse to give up on both myself and my future no matter how unpredictable, agonizing and frightening it may be. Although “trust” is a big meaningful word and needs to be earned, I trust that life will guide me onto the right pathway to continue my uphill battle, to serve my true purpose on this planet. I trust it will continue to give me strength to carry on, store blocks of much needed wisdom to grow in my brain, and most importantly, I trust life will give me time to reach my true potential, to reach my ambitious goals in my own time and ways. I trust life will give me hints on how to live instead of just survive.

I had my 18th birthday in the hospital in August. A lot of people said, “well done for making it to 18” and “congratulations, you made it to adulthood!” and it made me think…

My god, I did it!

I survived! 

I’m alive.

I’ve stared death in the face on two occasions and I’ve lasted 18years on this earth.

I’ve faced enough challenges and endured enough hardship to last a lifetime.

I may not have achieved what I planned… but I’ve achieved so much and even the impossible… in only 18 years.

It’s only just the beginning of a unpredictable but exciting adventure and many years and milestones ahead. Anything can happen. That’s what excites me. It keeps me going; it’s my reason to keep strong and fight on.

If you fear the future, it can hold you hostage. If you’re optimistic, you can be free (even if your future isn’t medically and scientifically bright).

Phrases such as “New Year, New Me” or “New year, New Start” don’t really apply to me as a person with a chronic illness. Many of us will unfortunately go into the new year with the exact agony and sickness we were enduring throughout the last year. At midnight on December 31, we can’t banish or erase our illnesses and pain. We can’t always plan the year ahead. We can’t run away from our bodies.

But, I can become a better me. We can find ourselves and our purpose. We can go into the new year and begin a fresh chapter while reflecting on our previous ones. We can build upon our foundations and become a stronger, happier and more intuitive version of ourselves. We can turn negativity into positivity and choose how to recycle our previous experiences to fight with all our might. We can accomplish all our goals, hopes and dreams. We can conquer and succeed in 2017.

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Image by Dmitrii Kotin

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My Sick Leave Is Not a 'Holiday'

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“It must be nice to get such a long holiday!”

The cheerful sentence stopped me dead in my tracks. I had one of those moments where your brain is so busy trying to figure out what just happened that time seems to stop.

The reason the world ground to a screeching halt was because the comment came mere moments after I had explained that I would be off work for at least eight weeks due to an open total hysterectomy, the removal of my last ovary, and cancer staging surgery for my second ovarian tumor, which had developed within 12 weeks of my finishing chemotherapy.

Emotions had been running high for several weeks since the tumor had been found, so it was a surprise even to me when I managed to actually think before I responded.

I found myself thinking, “What do I need to communicate to have this situation properly understood?” which, seeing as I don’t usually have much of a filter between my brain and mouth, was actually a pretty impressive accomplishment.

I settled for, “This is not a holiday. I will be having major surgery, which is going to have a difficult recovery.”

My self-congratulations at a reasonable response was interrupted by a reply: “But it will be nice to have some time off to have fun and relax.”

OK. That didn’t work. Maybe if I clarify the situation?

“Actually, surgery and recovery isn’t fun, and I find it quite stressful… I will be in bed because I will literally be unable to walk after being cut from my pelvic bone to above my belly button, having organs removed, and taking biopsies of everything from my pelvis to my diaphragm.”

I felt what’s known amongst my friends as “that look” creep onto my face, and I abandoned the conversation, figuring it was a lost cause.

But instead of being infuriating, the experience was quite liberating.

After years of invisible, misunderstood chronic illnesses. After years of thinking it was my fault for not being able to properly articulate what illness was like or that if only I had a “higher profile” disease people might understand… all of a sudden it was made clear that the problem wasn’t with myself or my illnesses. The problem laid squarely at the feet of people who did not want to understand.

I have found time and time again that there is a burden of explanation, rather than a burden of understanding. Despite being the disadvantaged party, wracked with fatigue, it is expected that I explain my illness well enough that it can be understood.

But at a certain point that burden must shift. After a clear explanation, it is no longer reasonable for a person to ignore their burden of understanding.

At a certain point, we must very clearly say, “Your lack of understanding is not good enough. You need to do better.”

After all, there’s only so often I can explain.

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Thinkstock image by odla3D

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