Harmony Tarrant

I have VACTERL syndrome. My intestines can't function properly so i have accidents and have to do treatments in order to even have bowel movements. i have 2 uteruses and 4 ovaries, and moderately sev
Community Voices

Disability can happen to anyone

When you’re disabled, or chronically ill, the people around you tend to have a lot of…advice in order for you to “get better”. Or, they claim it’s not a big deal because they deal with “fatigue, pain, and bathroom issues too”.

Some people will go as far as looking down on you because of your illness, because you obviously put yourself in this situation, you’re not taking care of yourself good enough, otherwise you would be better by now.

It’s hard to describe being disabled to someone who isn’t. Mainly because there are similar correlations like pain, fatigue, indigestion, etc. For these to become a chronic everyday issue, the abled person has to assume these adjectives have more severe consequences, (basically worse than they have it or can imagine) and that they can be pretty permanent for a person. And that’s a hard pill for people to swallow: Permanent. This is a word we can seldom grasp, because everything in our life changes. The things that don’t, such as death we avoid talking about at all costs.

But let me tell a story that an abled person can understand. My dad has a friend who is vegetarian. He eats lean and clean, all the time; he’s a “health freak”. One of those who goes to the gym as much as he can and has little fat content, but natural muscle mass. He looks way younger than he is because of this. He doesn’t drink, smoke, or do any drugs. He doesn’t do cheat days. And he lets his body heal after an intense workout. One day, he gets a blood clot in his arm and foot. He gets it checked out, but the doctor said he’ll be fine. The next day, his entire arm turns black. He goes to the ER, and his arm has to be amputated. Luckily, they could save his foot. He is now forever disabled, with one arm.

This is a guy who did everything right. He was obsessed with being as healthy as possible, and that’s what he was. He never drank alcohol or soda, never had a cheat day, ate all the vegetables, fruit, nuts, etc. Drank only water, and was always hydrated. Went to the gym consistently, and had little body fat. No exercise injuries for pushing too hard. It was always enough to stay lean and skinny. But despite this, something still went wrong and he became disabled.

It just goes to show: you can do everything right, but that doesn’t mean nothing will happen to you like most people think.

When you have a #ChronicIllness, it doesn’t mean you’re doing something wrong; it means your body is broken. It’s abnormal. And a lot of times, it’s incurable.

In order for something to be curable, there has to be a procedure or medicine that can stop all the symptoms or defects. In order for this to happen, the illness first and foremost has to take priority in research, and have the financial means to do so. But in order for THAT to happen, a large majority of the population has to have the illness. The medical field can’t just spend a ton of money on research and medicines for the 1% who has it. And that’s where most chronic illnesses lie…in that 1%. Do you know the statistics on how many people have #Vacterl? 1 in 40,000.

There are things you can do to manage your illness, but even these managable procedures don’t cure you or put you in remission. Some procedures can make you feel worse but they are necessary to keep you alive or to keep your illness under control.

And some things have to be limited. The world now thinks “exercise is the cure to EVERYTHING!” When in reality, people with defects in their bones and/or muscles can’t do normal exercise routines without making their pain worse and their bones in faster decline. This doesn’t mean they can’t exercise, it means they have to find other, more “softer” exercises such as yoga, walking, or swimming. Normal exercises such as running, competitive sport, jumping, sometimes weights, can ricochet the bones and grind them faster and harder against the cartilage or raw grinding bone to bone leaving less space and a LOT more pain.

Even so, if the illness is correlated with chronic fatigue or #ChronicPain, these exercises can create an entire day of increased chronic pain, and/or chronic fatigue–especially if you try to exercise on a bad day. Not always though; with chronic illnesses we have these strange random symptom rules where an action (say exercise) can make you feel stronger one day, but the next day this same action can make you feel 10x worse. We don’t understand it either….

This leads me to my next point: Our symptoms are not the same as yours. When I say I have stomach cramps or constipation, I don’t mean I ate a little too much. My intestines are paralyzed, meaning they don’t move food all the way through on their own. This causes severe obstructions, and literally screaming pain. The medicine I take for this causes more pain because they basically create seizers in the intestines to get them moving. And because your putting more things in your intestines, something that is made to also expand the feces in a sense, so think of an obstruction, then make it 2x bigger.

When I say my back hurts and I’m tired, I don’t mean I’ve been slouching on my feet all day. My spine is a literal S with deformed butterfly-like vertebrae’s and fused vertebrae’s. I have a severe curve that sticks out my back. I have #Arthritis, and with my bones at an angle there is way less cartilage, so there is a lot of inflammation and way less time than normal people for my bones to literally grind on themselves with every move I make. For people with severe #Scoliosis, yes hello, WE PHYSICALLY HURT. Our bodies have to make up for the deformed spine, which make sacrifices in other ways, such as walking different in order to “correct the balance” which in time can create arthritis in the knees and more pressure on the lower back to hold up the upper back. Our bones are literally grinding on an angle creating inflammation and decreasing our cartlidge more and more. Our muscles have to work twice as hard at all times, in constant “clench” so we are able to even move. This means we are constantly using energy, even when sitting down. This is why we can more easily be fatigued, even if we haven’t done much.

We’re not being overdramatic. Our bodies aren’t normal, so they don’t “do normal things” and therefore we are not on the same level of fatigue or pain. My body is working differently than your body. There’s a reason why it’s called chronic pain, or chronic fatigue, or chronic illness. It’s severe, and it’s ongoing. We’re not just in pain, and we’re not just tired. So before you say it’s not a big deal because you go through it too, ask yourself if your body has severe defects that can’t be cured.

And my final point: Your advice won’t cure us. For some reason, when you have a chronic illness suddenly your friends and family are expert specialists and have all these answers to try. And most of the time…they’re so simple and it’s either already been tried by us, or it’s so stupid it’s laughable. The laughable advice are the people who tell you to take this miracle grass juice, people who tell you to literally think yourself into a “normal person” (visioning yourself cured/as a normal person and your body will magically follow suit) and the people who tell you to go on a “cleanse”. The simple advice people give, is to exercise, do yoga, eat healthy/vegetarian, put ice on it, put heat on it, surgery (which isn’t possible most of the time, or there isn’t a surgery to cure it) etc.

This “advice” if it’s applicable, we have already tried and is probably part of our management if it helps us in the slightest (most of the time it doesn’t do zilch) but it will not cure us or put us in remission. Because if it did, we wouldn’t be having this conversation.

So please, before you judge someone with an illness or injury put yourself in their shoes. Know we are not functioning on the same level, and that sometimes *gasp* some symptoms can be worse than yours. If it hasn’t been cured by a doctor, chances are your advice won’t cure your friend either. And remember, you can do everything right and still have something happen to you. Being disabled can happen to anyone, even you.

Eliana Bergman

Tips for Supporting a Loved One With Scoliosis

Let’s face it: scoliosis can be a real pain in the ass sometimes. The pain associated with it can be mentally draining at times, and physically demanding most of the time, and unfortunately, it changes day-to-day, making it extremely emotionally taxing for the people living with it, but also for the people who love them. Sometimes, situations have to be avoided, needs need to be accommodated, plans change, and ultimately, pain takes top priority. It’s all these factors that can make scoliosis understandably exhausting for everyone involved. So if you love someone with scoliosis and you’re having trouble dealing with it, here’s a cheat sheet to help you get through it. 1. Consider yourself lucky to know them. They are probably one of the toughest people you will ever meet. Let me break it down for you: It’s pretty easy to get caught up on the small things. You know, all the pain and issues associated with scoliosis, and the not-so-fun, unavoidable spinal deterioration can be a real mood-killer. However, you know and love one of the toughest people alive. They are determined, dedicated, and full of strength. They have dealt with agonizing pain and discomfort for years with a smile on their face. And your job is to support and love them for the years to come. You are pretty damn lucky in my book. Not everyone knows and loves someone as tough as you do. 2. Remember they are more than just their scoliosis. I know that sounds pretty obvious, but people have a tendency to become blind-sided by any physical limitation. It’s as if once they know the person has an invisible disability, they have to walk on eggshells. Trust me, it’s weird, don’t do it. The person you know is a complex and wonderful human being and doesn’t need to be labeled by one small characteristic. They are so much more than this one trait. 3. Sometimes even the smallest things can be exhausting. Pain is exhausting and completely draining, and if you are not in pain, it’s sometimes hard to remember just how tiring it can be. Pain comes from the body constantly fighting its issues, and it is that internal fight that leads to exhaustion. Everyday situations tend to be a lot more draining for people dealing with pain all the time. So next time you are pushing your friend with scoliosis to do something or go out, and they don’t want to join your proposed adventure, just remember that they may actually be really tired. 4. They are well aware their pain doesn’t always make sense. Pain doesn’t always accommodate pre-existing plans. Being aware of this might make it all easier to deal with. One of the most frustrating aspects of scoliosis is the difference one day can make. One day, they can be running a marathon, and the next day, they might not want to move. Pointing out what they were able to do yesterday, but are having trouble doing today, doesn’t help at all. Instead, try being supportive and understanding of their needs. 5. Do not ask, “Are you OK?” while they’re dealing with a muscle spasm. When you see someone clenching for dear life because they are trying to survive a muscle spasm, do not ask if they are okay. To be frank, they probably feel like their body is entirely giving up on them. So instead of asking them if they are OK, try saying something helpful, like “remember to breathe.” 6. They appreciate you being there. Let’s be honest, we all know scoliosis sucks sometimes. It’s hard for everyone involved, including the people supporting them. But your support doesn’t go unmissed; they hopefully recognize all you’ve done for them, and they are definitely not oblivious to what it takes to stick by them. So on behalf of my fellow people living with scoliosis, I would like to personally thank all those supporting and loving a person with scoliosis. You are all the best! 7. Don’t get sad if you feel ignored; it’s probably not intentional. It’s very challenging being uncomfortable and in pain most of the time. Chairs are not made for people with deformities or people with rods in their spines. So if you are in the middle of telling a story and you notice they are twitching and spacing out, remember they might be dealing with something internally that they are not vocalizing. It takes immense concentration to be able to ignore discomfort and pain and focus on a story or conversation. They want to be a part of the conversation. They want to be involved in what you are saying. They’re not ignoring you; they’re just trying not to break down right there in front of you. 8. They might not know how to ask for help. They have probably dealt with their pain their entire life; they know what they’re doing. But even the toughest people need a little help sometimes, and that’s not always easy to recognize. As a support system, remember to be available so when they do reach out for your help, you are always there. 9. It’s totally OK to be frustrated. Part of loving someone with scoliosis is taking on some of their frustration. There are times you may want to scream, to cry, to be completely upset that there aren’t more solutions available for people living with scoliosis. You may go through days where you will wish it was you instead of them. You may want nothing more than to change their situation, to fight with every orthopedist that provides zero solutions, because you will want nothing more than to make their life easier. And it can be incredibly frustrating knowing that there is very little you can do. Just remember, you are vicariously dealing with scoliosis, so it’s OK to be frustrated. It’s OK to be upset. 10. Remember they don’t always see their scoliosis as a limitation, and neither should you. The pain sucks. The discomfort is challenging. The deteriorative nature of the condition can be debilitating, but just because it’s challenging, that doesn’t mean their life is over. Scoliosis has likely influenced the person they have become. Remember they are who they are — the incredible person you love — at least in part because of what they’ve been through. So there you have it, the ultimate cheat sheet. You’re welcome. Keep this list in mind when you’re having trouble being the support person — it might help you survive those tough days. Follow this journey on The Curvy Spine. We want to hear your story. Become a Mighty contributor here . Image via Thinkstock.

Rosella Walker

5 Underrated Benefits of Medical Cannabis for Crohn's and Fibromyalgia

Editor’s note: Medical marijuana/cannabis is not legal in all states and countries. For a list of states where medical marijuana is legal, click here. Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. When weighing your treatment options, you often do research and try to paint yourself a realistic picture though all the hope. When I started research on medical cannabis, I was skeptical — maybe even cynical. I had already tried so many snake oils for pain management and I was tired of being jerked around. What I found when using medical cannabis is that not only did it help me with my pain, my appetite, and increase my quality of life, I also realized there were a few underrated benefits no one talks about enough: 1. Friendly and knowledgeable dispensary employees and budtenders: You want to understand fear? Go to the ER and tell your doctor you have two chronic illnesses. Then watch that same doctor pull out his smartphone and Google one of your conditions.A few people at the dispensary my husband Zaine and I frequent see a lot of different kinds of patients from all walks of life. My husband and I shopped around for a “homebase” dispensary — a place where we could trust the people working there, where it felt comfortable and relaxed, with fair prices and good product. Eugene, Oregon’s market is flooded but it wasn’t long until we found a shop just a few blocks away from where we live. Zaine went in a couple of days after they opened and picked out some medicine for me and liked how welcoming it felt, and how accessible all the budtenders were. He’s built a rapport with the employees there now, and they know what he’s looking for and all about my Crohn’s/fibro needs. Budtenders like questions; specifically, they like knowing what’s going on and how they can help. In my experience, they care, they’re on your team, and they want you to feel better just as much as you do. Take the same amount of care picking the places you get your medicine as you do the doctors prescribing it. 2. Variety: Flower, dab, concentrate, topical creams, edibles, vaginal creams, oils, patches, etc. There are so many ways to take cannabis-based medicine. The variety of products can be tailored to fit your care plan — for fibro, I like to ideally use a hybrid flower in the beginning of my day, and an indica with a moderate THC for the middle. I can smoke socially with my neighbor (who is also chronically ill) and we’ll chat about life and such while we get out of pain together. Then we can share coffee/tea and snacks.If I need to I can sneak in an edible or two for body aches if necessary, and then as my day is winding down I smoke a bowl or two myself, or if it’s been a bad day, I can call another friend (another chronically ill friend), and he’ll bring his rig and we dab high THC concentrates until we’re both tired and we sleep. I’m trying to work in tolerance breaks and so far, I have averaged about two to five days a month (which is plenty for now). 3. Autonomy and Customizability: I can pick when to take my medicine, I can pick where I get it, how much I’m willing to spend, how much I need, how I plan to use it, what strains I get, where it’s grown, how it’s grown, etc. This is the most free I have ever felt in a treatment plan. The regiment I have listed out is a combination effort between my husband and I. We get to work together to fine tune the treatments on my own. 4. Fun and Sociable: This seems weird to write about in an article about chronic pain and medical treatments, but I’m going to be 100 percent honest: Cannabis makes me social. It gets me out of that anxiety funk and makes it easier for me to talk to people. I don’t depend on it; rather, it’s helping me work out why I’m anxious and help me be social when I’m not medicated as well! 5. My pipes are cute — there, I said it. I take as much pride in having cute pieces as someone who decorates their cane or ostomy bag does. It doesn’t change the fact that I have something wrong with me, but it does brighten my day. I have a cute, blue swirl glass piece and another cute green glass swirl piece. They’re just little pipes but I like them. I want to get a glitter pipe next and a decorative vape pen that I can take with me for when times are really rough. I hope soon I can also branch out and try a few new things but we’ll see what money and time permits!I’ve found lots of hidden benefits to cannabis that were just waiting to be discovered. Cannabis just might be the ticket for many chronic illness patients to take back our lives and take over our treatments. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by OpenRangeStock