How I Keep My Relationship Healthy While Relying on My Partner for Care

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Maintaining a healthy relationship can be really hard when one of you is reliant on the other for care. My partner Addz and I have been together for seven years, and for the last five he has also been one of my caretakers. He helps me with personal care, with daily living tasks like cooking and reminding me to take my pills. He carries heavy things (and not-so-heavy things), and assembles my wheelchair when we go out. Despite me needing a fair bit of help these days, we’ve managed to keep the love alive.

While talking about this Addz said, “I don’t see myself as a carer — to me a carer means doing most things for that person all the time. A carer does more than I do.” My personal opinion is pretty different. A caretaker is someone who helps with what the care-ee needs. Addz said, “I know you need help with some stuff so I just do it, it’s instinctual. I know you might fall down so I’m always ready to catch you.”

With us, the “care” instinct goes both ways. We work as a partnership. Each of us has our own skill set — I suck at standing up and I can’t lift heavy things, but I’m awesome at crafty things and I carry everything but the kitchen sink in my handbag… or rather, Addz carries my handbag… but I packed it.

Day-to-day, we try to make “care” activities “romantic” ones instead. I need help negotiating the bath, so instead of just lifting me in and leaving, Addz stays and we share a bath (I do realize the logistics of sharing a bath make it basically impossible for some people, but it works for us). Plenty of activities can be shared.

Addz loves running outdoors. I know he needs his own space but I also know that having shared interests is important. If he’s going running somewhere pretty we’ll go together. He can go off for a run and I’ll wander around with my camera. This works well for us — he gets his own space but then we can talk about our trip on the way home. We get home, both in need of a rest so an afternoon of TV on the sofa meets both of our needs! Fatigue is much easier to deal with when you’re not alone.

Living with variable health can make planning ahead impossible. Addz and I tend to schedule in “time” for each other, we make actual plans at the last minute. On the rare occasions we do make plans, it’s always good to have a backup. Last week we’d planned a picnic, but I woke up feeling bad so we went to a gastropub instead. We parked 10 steps from the door and had comfy seats to sit on. We still got to share a meal but I wasn’t totally knackered and someone else made the food! Addz said, “We’ve learned to accept that if we plan things it might not always happen.” Pushing through isn’t always worth it if I end up in a flare afterwards.

One of our key skills is communication. Even when asking for help I do my best to stay casual. I don’t refer to my family caretakers as my “carers.” They are my family… who happen to care, too.

Addz, I’ve had a fall and need assistance regaining my feet” simply becomes, “Addz I fell down again, help please.”

“I’ve dislocated my shoulder, please assist me” sounds impersonal, whereas “Addz, my arm fell off” is much more me

I think there is an element of self-fulfilling prophecy with relationships. If I call Addz my “caretaker” he will eventually become just my caretaker.

Addz says, “If you refer to me as your ‘carer’ then I’ll start to think of myself as your carer, which leaves less room for boyfriending. It’s like a ratio — I’m mostly boyfriend with a little bit of carer, but ratios can change.”

Intimacy is one of the cornerstones of a relationship, and it’s something that can easily be lost when the “caretaker” role starts to creep in. By intimacy I don’t actually mean sex. Sex is great, don’t get me wrong, but I don’t believe it’s an essential part of a relationship. Sex with Ehlers-Danlos syndrome has its own set of problem — dislocating hips, fatigue and pain all put a damper on bedroom antics. Addz is always happy to take things at my pace, even if that pace means no sex at all. This doesn’t mean we aren’t intimate. We kiss and cuddle and never sleep on opposite sides of the bed. This isn’t just in bed — we’ll hold hands while I’m resting on the sofa, we kiss while waiting for the kettle to boil and we hug lots … hugging someone is also a good way to avoid falling over.

This is just a snapshot of our relationship, a happy relationship. I am constantly reminding myself just how lucky I am that when my body fell apart, my relationship didn’t.

man and woman smiling in front of water
Jo and Addz

Follow this journey on JBOT Adaptive Disability Lifestyle.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Advocate for Self-Diagnosing

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A huge stigma about self-diagnosing exists among the medical community — how it’s a bad thing; if you tell your doctor “I saw X online” they automatically brush you off and label you as a hypochondriac, drug seeker, etc. All of this is what I was afraid of when I went in to tell my doctor (who I’d learned about online).

I’d been struggling trying to figure out what was making me feel so awful for a long time; I just wanted answers. My doctors couldn’t find them; they kept saying everything was OK. I did all of those “symptom checker” things online where you put in all your symptoms and it tells you what may be wrong — I got desperate because I had no idea what was going on in my body. But they were all 110-percent unhelpful.

Then, an Instagram account I had for my dogs actually became beneficial instead of just a way to kill time. I’d get on while I was bored or couldn’t sleep. I was following a few girls with service dogs who posted about their chronic illnesses. One night, I clicked on #spoonie on Instagram, looked at all the posts and saw a lot of people post about Ehlers-Danlos syndrome (EDS), among tons of other things.

Being the nerdy medical person I am (hello, I’m a nursing student!), I looked up all the medical terms and diagnoses I didn’t understand. Initially, it was purely for the sake of “oh, what is that?” but at some point it became about “maybe one of these people has whatever I have.” When I looked into EDS the first time, I briefly read
about it, figured out what it was and didn’t take it any further because it’d been an “what is that?” search. I didn’t think I have it since none of the main symptoms of what I found online really fit what I felt. But one day I came across it again on Instagram; a girl had posted a picture with all the symptoms included in her EDS diagnosis, most of which I felt; some things I didn’t even realize were “symptoms” were on the list, and it really resonated with me. I researched EDS as much as I could, considering there’s really not much about it out there, and realized “this
is me.”

I’d been to doctor after doctor for years. Some ordered tests, others didn’t; some cared, others didn’t; some believed me, others didn’t. I started to feel crazy. Do you know what that feels like? To think to yourself “Am I really this sick? Is it really in my head? Am I really just being dramatic about it? Am I unconsciously looking for attention? Is this how everybody feels and I just can’t handle life? Am I really this weak?” It’s an awful feeling to question your own sanity because you’ve been told so many times there’s “nothing wrong” with you. I hated it. People will tell you not to let it get to me, but when a doctor, the one person who is supposed to want to figure out
what’s wrong with you, tells you you’re fine, you start to wonder if you really are perfectly OK. Finally after two years of playing around with a handful of doctors and a specialist, my PCP finally decided I should see a rheumatologist.

It was around this point that I’d learned about EDS and “spoonies” and Postural Orthostatic Tachycardia Syndrome (POTS), but because of the stigma of self-diagnoses, I knew I had to be careful when I saw the specialist: during out extensive conversation I mentioned a bunch of symptoms I had, and she handed me a pamphlet on benign hypermobility syndrome (which, is actually not the same as EDS).

The day I self-diagnosed changed my life. Had I not figured out what was wrong, had I not advocated for myself, I may not even have a diagnosis now. I could still be questioning my sanity and feeling like a failure for not being able to do “normal” things. Now I realize there’s a reason for every single thing I feel, and it’s my new normal for me to not do some things others can do. I finally got the push from one doctor to see several others who were able to help me get some of my life back.

Self-diagnosing isn’t something to take lightly. When used correctly, it can be a tool to help you and your doctors understand what’s wrong. And if your doctors disagree with what you’ve found online, you may have to trust them to try to figure out what else it may be.

There is always a chance I could have been wrong in what I researched, in what
I believed I had, and if she’d told me no, she thought I had something else, I would have considered that as well.

Doctors are trained to think horses, not zebras, when they hear “hoof beats” in medicine, and that’s reasonable; you can’t assume everybody always has the “worse case scenario.” They also have a process of elimination for diagnosing, which I think is reasonable, and I think people should respect that. But I am the person who needed the unreasonable; I am the zebra they’re trained not to look for right away. There’s a whole herd of us out there, and we really have to advocate for ourselves (which often includes self-diagnosing) because at the end of the day, we are the ones the doctors aren’t expecting to see, and we can’t let our care suffer because of that.

Editor’s note: Please find a medical professional you trust when seeking a diagnosis and advocating for yourself. Do not take medication before getting an official diagnosis.

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To the Able-Bodied Lovers of People With Chronic Illnesses

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I’ve been unmarried to my “husfriend” for three years. I have Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, irritable bowel syndrome, gastroesophageal reflux disease, polycystic ovarian syndrome, gastroparesis, asthma and psoriasis among some other issues.

I met Jared in 2012, and my God, what possessed the man to pursue anything? Within a week of beginning to date, I had honestly told him, “I want kids, but may never be able to have them, and occasionally use mobility aids because my body is crap.”

Many men run. If you’ve made it this far, you’re doing well. Being his first everything, guilt set in — my fellow spoonies know that guilt. To our able-bodied lovers: That guilt will never go away, this niggling voice that says you deserve more. Please reassure us.

I ran, breaking his heart, for several months. Upon reconnecting, timing is everything, even the absolute worst. I was working at a gas station and lost the feeling in my legs. The only feeling was a burning numbness. I informed Jared that if we were together, it was forever… and we discussed everything. Upon getting to the eventual disability application process (which takes years), he held me close and said we would be OK, no matter what, for the rest of our lives. If you’ve gotten this far, you believe in your partner. If you can’t do that, leave.

Now for the nitty-gritty nobody likes to think about.

I think you need to reevaluate what your definition of commitment is. Marriage isn’t practical for us. Insurance is everything. His insurance would skyrocket if we married, and isn’t nearly as good as the insurance I already have. Does it invalidate our devotion to each other? Not in the slightest. Was that always easy to comprehend? No.

There are a billion appointments. Literally, a billion. Your spoonie is likely on a first-name basis with the staff at their primary care provider, and physical therapy in my case. Our full-time job is maintaining our crappy health.

If I could have Jared understand one thing, above all others, it is that my 100 percent is not the same as your 100 percent. He comes home from work and asks what I did. Today I vacuumed, did dishes and showered, before grocery shopping. He worked eight hours changing cable lines, then came home and took me grocery shopping. It breaks my heart when I try so hard, and he negates it because he does more. I think it’s the biggest obstacle we have.

I can’t speak for all spoonies, but here’s a small list that may summarize.

1. We may hate you at times, and we may resent ourselves for what we put you through.

2. Believe in us, regardless of anything else.

3. We may have to significantly alter life goals because of our illnesses. It hurts us, too.

4. We have more appointments than the Pope.

5. Our best won’t feel like your best. Please understand that. Consequently, our milestones are big for us. Please be happy for us.

Lastly, our capacity to love shouldn’t be diminished by what we can’t do. I know it’s one of the few things I do extremely well.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Coping With 'What Could Have Been' in My Life With Chronic Illness

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I am excellent.

Also modest.

The thing is, my body isn’t so excellent.

One of the most difficult things to learn to deal with when you have a chronic illness is the curse of “what could have been.” Many people I know, people who have no health problems, have said to me, “Well, Natasha, that’s just life. You don’t always get to do what you want.” I would argue it’s so much more than that.

Getting ill at whatever age sucks, but when you’re in your teens and 20s, you’re supposed to be out there, living the life and doing all the things you’re supposed to be doing to at least try to create something. A huge amount of opportunities are taken away from you, and things you would take for granted just aren’t even an option.

A few of my friends, one in particular who this blog post is for, have been speaking to me recently about their feelings of unfulfilled potential. And trust me, I know how they feel. It’s the one thing I have to constantly push to the back of my mind in order to get through each day.

I have had opportunities, personally and professionally, that have been really fantastic and in some cases once-in-a-lifetime. However, because of my declining health, I’ve had to stop each and every single one of them. Managing my emotions around this is probably as hard as the physical act of having to stop. And while it still affects me, I’m getting more and more used to figuring out how to cope with it. But, I have to say, sometimes it really does affect me. And most people don’t see me when I’m a crying hysterical mess about it. It’s OK to grieve for what you feel like you’ve lost, and don’t let anyone tell you that it’s not. I just think it’s just incredibly important to not let it overwhelm you entirely and keep you stuck there. My mom has a rule that she’ll let me wallow for a day and then I have to deal with it.

My current way of dealing with life is that I just have to go with the flow. And honestly, this is the best advice I can give to anyone. Here’s why:

The last few months have been particularly bad health-wise. I had to stay with my parents at the house and was incredibly unwell. Then I felt a tiny bit better. And yesterday I had two hours where I felt better than I did in months. It was extremely exciting. And then my body crashed and I felt utterly rubbish again. It made me sad.

It was like a lovely little microcosm of my whole experience with chronic illness.

The lack of security in knowing when you’re going to be able to do things is the one thing that stands in my way when I’m trying to go out there and pursue the things I enjoy. After brief (read: several prolonged) freak-outs about not having a full-time income, I realized that no matter how much I wanted to be working a full-time job in a field that I’m passionate about, I’m just not well enough.

I’m trying to learn more about pacing and being sensible about how I look after myself. Pacing is the one thing I hate. I’m very boom-and-bust, but I think that’s quite common for many of us. I’d rather push myself to keep going, keep trying, keep fighting as much as possible, so that when I stop it’s not my decision, but my body forcing me. But I’ve realized that stopping and resting, truly resting, is the one thing that I can do to try and make sure that I’m listening. Now when I do an activity that I know is exhausting, I won’t spend hours afterwards working in bed (that’s not resting!) and I’ll make sure to really plan what I’m doing to try not to make myself worse.

When I talk about not pushing, I don’t mean just stopping and giving up. It’s really important to learn your limits and to keep trying new things, even if you have to stop. Find compromises and be proud of small accomplishments.

I’m interested in too many things to have a fixed goal, and I don’t like them anyway. I need to be able to be flexible (ha, Ehlers-Danlos syndrome joke) enough to make changes to what I’m doing while trying not to get too upset if I can’t do something that I want to because I’m not well enough. Accepting that is really important. It’s not using my health as an excuse. It’s accepting where I am right now physically, and making sure I’m doing everything I can to look after myself.

One thing I have never struggled with is guilt. I don’t somehow blame myself for the way I feel. It’s not me, it’s not a reflection on me. It’s my body. I have a condition that I was born with. My Ehlers-Danlos syndrome collagen dysfunction has buggered me up. That’s not my fault. I never see my inability to go and do things as my fault. I don’t feel guilty about it. I know with all my heart that I try so hard every day just to keep going. That anything I do on top of that is a big deal. Seeing small things as victories seemed super lame for a really long time. But it’s vital to start understanding that they are.

Is it frustrating? Of course it is. But if there’s any advice that I can depart in a tl;dr kind of way, it would be this:

1. Never give up — find compromises and things that keep pushing you forward. For me it’s my course, teaching myself to code, doing small flexible freelance jobs (I am determined to find work that is me-friendly. It may not be for a big company, but I know I have enough to offer that I can find a way to make it work) and writing this blog

2. Celebrate your small victories.

3. Don’t feel guilty if you can’t do what you thought you would be doing.

4. It’s OK to grieve for what you wish you had.

5. You’re still you.

6. Find a support network and people that understand you without you needing to explain.

7. Your life isn’t over, it’s just going a different way than you thought. Channel that into something else, no matter how small. Even if it’s finding the energy to make some food or have a shower.

8. You’re not the only one going through this and the more we all try and raise awareness, the more support (hopefully) we will get.

Follow this journey on Natasha Lipman.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Mourn Who I Wanted to Be Before Chronic Illness

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After years of suffering in silence, I finally fought my way to a diagnosis (Ehlers-Danlos syndrome). At first I was elated. Finally, I could tell people I was sick and give them a name of an illness that described my symptoms. I thought that having a tangible diagnosis would allow me to be who I truly am in public. No more pretending to be home doing homework. No more ducking phone calls and avoiding social invitations. No more fighting accusations or implications that I am lazy. No more questioning of my intentions. No more lying to myself.

Part of my diagnosis includes the prognosis that I will not get better. I will never wake up feeling rested. I will never run a 5k (I don’t know why I want to do this, anyway). I was told I can never do any high-impact activities because the risk for fractures and the inability to heal is so great. At first I didn’t really think these things mattered. After all, I no longer had to pretend to join a gym or exercise. But I also can’t actually do these things. I can’t be who I pictured I would be. My world suddenly feels so small. I never got to do an adult hip-hop class! I can never do boxing again.

I never thought there was going to be a magic pill that made me feel better. But hearing that I would never get better or, as my doctor put it (and I quote), “You will probably never be who you wanted to be” was beyond devastating. Like, someone needs to invent a new word to describe how I feel. I always thought if I could just find the right diagnosis, the right doctor, the right treatment, etc., I could work really hard and feel better and live a “normal” life for the first time. Nope. Not happening. And I do not want to hear about “what I can do” or my “new normal.” I’m still stuck on what I wanted. I wanted to work long, rewarding hours. I wanted to bounce from work to happy hour. I wanted to stay up past 8:30 p.m. and still be able to function the next day. I wanted to join a 7 a.m. spin class and only make it there once a month. I wanted to work two jobs and come home and do the laundry. My expectations were not too high.

What I want you to know is that I am mourning who I wanted to be and I’m not done yet. I wanted to be “normal.” It wasn’t too much to ask. I know people have it worse than me. When I break down and cry because I am so sad, please don’t tell me it will be OK. Tell me I deserved what I wanted to be. Tell me I did nothing wrong. Tell me it’s not my fault. Tell me how hard I tried. Tell me I’m good enough.

I always wanted to do something great, something extraordinary. Maybe the challenge is finding out what that thing is within the confines of my limitations. Give me time to mourn who I wanted to be, and I will get back up.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I’m Thankful for the Doctor Who Admitted He Didn’t Know About Ehlers-Danlos Syndrome

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Imagine having a disease where 99 percent of the population has never heard of it. Now imagine included in that group are medical professionals. Or if they’ve heard of it, it was just briefly in school, not since then, and now you appear like a sparkling zebra out of a story book. This is my life.

I have Ehlers-Danlos syndrome (EDS), and basically this means that due to a genetic defect in my collagen, I have all-over weakness, joint instability, severe pain, fatigue and multiple comorbidities. EDS literally effects everything in my body from my skin and my blood vessels to my digestive tract. Even though I have shown signs of EDS since infancy, it took 32 years for me to get a diagnosis. Living with pain is something I have unfortunately gotten used to over the years. From eight surgeries for endometriosis and my gallbladder (endometriosis can be associated with EDS), to daily back and joint pain from my hypermobile joints that bend the wrong way and can sublux at any time (ever sublux your shoulder while sleeping? Good times!).

The one thing I will say has been harder for me to accept as someone living with an invisible illness is the lack of knowledge and understanding from just about everyone. If I only had a dollar for all the nasty stares I get when I pull into the handicapped spot, using my placard that my doctor approved for me. Or the comments “You’re too young to have so many problems.”  “You look fine to me,” said by a doctor!  “You need to eat a steak,” said by a rude older man at the grocery store, in reference to my small size.

woman standing in a yard with her dogs
Valerie in her yard in Florida with her two dogs Rocco and Leila.

Recently my husband and I packed up our family (two pit bulls and a kitty) and moved to Florida in hopes that the warmer weather would help. In trying to find all new doctors, I yet again was faced with a challenge of being a zebra in a herd of horses. In medical school they teach an analogy: When you hear hoofbeats, think of horses not zebras. This is to teach doctors to think of the most common things first. But zebras do exist, and this is why the zebra is the mascot and ribbon color for EDS.

After being outright denied by some doctors, without even an explanation, I finally was offered an appointment with one, and I was nervous but hopeful. This doctor came into the room and couldn’t pronounce Ehlers-Danlos! He made several incorrect statements about my disease and after a short while, when I was certain he was going to be yet another one of those doctors who saw me as a faker, drug seeker, and who was clearly uneducated and unwilling to help me, I left as quickly as I could. I had to pull over a block away because I was sobbing. How is it that medical professionals don’t know what to do with me? Why can’t someone help me?

Later that day my phone kept ringing. It was that doctor’s office. They called and called. Finally the next day, the doctor left a voicemail. When I called back, he admitted that he didn’t know about EDS; they only learn very little about it in school and it’s rare to ever see it again in practice. He had researched my condition and was willing to keep learning in an effort to help me manage my symptoms and live a better life. I can honestly say this has never happened before. I’ve been told by many doctors they can’t or won’t help me. I’ve been told (pre-diagnosis), “You probably have that, but no point diagnosing you, because nothing can be done to help you.”

I couldn’t believe what this doctor was saying in some respects. Yes, I was very, very aware of the lack of knowledge and understanding of EDS among the medical community. But for him to actually admit it and say to me that he wanted to help me, wanted to do more research in order to better care for me, that was shocking. No doctor had ever said that to me before. None had ever expressed a desire to further their learning in order to help me. Why aren’t there more doctors like this, I’ve thought? Why aren’t others willing to learn to help their patients?

So needless to say, the doctor that made me cry in my car, that I thought was just another doctor who was unwilling to understand, has become my new doctor. I was so wrong about him and I’m so glad I gave him a second chance and thankful that out of the tons of doctors I’ve met, I’ve finally found one willing to help me. It also makes me sad, not only for me but for the thousands of others out there that suffer from EDS, that this is such a shocking occurrence. In my opinion, this should be the norm, not the rare. It’s almost like finding a doctor willing to help a zebra was like finding a zebra of my own. So very hard to do!

I finally felt like someone understood after talking to my new doctor. He now gets just how hard it is for someone like me (and the many others who suffer with EDS) who go for years being told they’re either faking or misdiagnosed. No one should have to go 32 years to get a diagnosis because the medical community lacks knowledge in their disease. It’s an amazing feeling to know my search is over. Years of always searching and holding your breath, each time you see a new doctor. They label you a “doctor shopper” all because you have your best interest at heart and you see doctor after doctor, looking for someone who understands, someone who treats your condition and is willing to help you.

It is my wish that everyone who doesn’t know about invisible and rare diseases educate themselves, and learn that they do exist, and to be sensitive to people suffering from them. The judgment and lack of understanding hurts so much deeper than the physical pain. I hope one day our doctors and nurses will be better educated on rare diseases. My story is not unique. For all the other zebras out there who share a rare disease, please keep looking. Your doctor and support system is out there, too. We all have to be there to help each other. Don’t give up. Help is out there.

To learn more about how my EDS affects me and learn how you can help with my upcoming out-of-state surgeries, visit www.youcaring.com/HelpValerieFightEDS.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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