girl standing under large tree

I look like a well balanced 18-year-old on vacation. My dad took this picture of my on our recent trip to New Orleans. There are many things that must happen before I am ready to present myself to the world. My backpack hold my drain bag of urine, and a tube runs from my belly button under my dress and into my backpack.

girl standing under large tree

My dress also covers my Pull-Ups. It’s a large place of embarrassment for me. My jagged scars, lines that didn’t come out straight and healed into rounded paths that run across my torso.

Every day could be judgment day for someone who has a hidden illness. Why do you wear your pajamas in public? You don’t deserve to be here. Why can’t you be a “normal” functioning person? Can you hide your bag behind you for the picture?

I just started to notice the ableism in my life. The backhand comments, the looks, the ways I’m told that I’ve missed too many days to stay at this school.

People see it as privilege, the ability to get out of going to school and being exempt from school work. Sleeping during the day. All of these things sound nice, but after awhile you wish you could run with the rest of the crowd. I would take consistent and full-length school days over doctor appointments, IV infusions, therapy appointments because of “medical trauma,” and hospitalizations. I’d rather be well enough to do the work than get out of doing the work because I’m too sick.

I look healthy, I am relatively healthy (in terms of things). But, there are still days that I have to sit out, from doctor appointments to pain.

A comment coming from an able-bodied person about a non-able-bodied person, is so often judgment. So, next time you see a child acting out, don’t stop and stare, don’t complain. Keep walking because you don’t know their story.

Or next time you see someone who always falls asleep in class, don’t assume they’re lazy, don’t assume they’re irresponsible. Because you don’t know their whole story.

Don’t laugh at people for their differences, don’t assume, don’t judge.

There are so many positive things you can do:

Make sure someone isn’t falling behind.

Make sure someone is safe.

You can turn your act of judgment into a positive action that will help someone instead of hurt them.

A picture may be worth a thousand words, but that doesn’t mean it tells the whole story.

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Emotional pain is like a summer storm. As you’re enjoying the warmth radiating from the sun, a dark cloud-covered sky arrives and indicates what’s about to come. Lightning strikes. Thunder claps. The earth shakes. And you scramble to find shelter to keep yourself safe. Pain often works the same way. It’s unpredictable, damaging, and springs upon you when you least expect it.

A year ago today, April 2016, was when I experienced one of my most painful periods and deepest lows to date. Just like a storm, this period of my life left a mark — one that I have not been able to shake.

I had been hospitalized for another illness, but this time, it took a huge emotional toll on me. Over the past couple of years, my health had taken a steep decline as my disease progressed rapidly. I lost the ability to speak a single sentence without feeling winded. The energy it took just for me to speak affected my life greatly as my body was working in overdrive to do a simple, daily task. I was exhausted both physically and mentally and somehow coaxed myself into thinking that the next time I was to get sick would be my last.

I cried every single day in that hospital bed. I was irritable. I was in physical pain. I had tubes all entangled in me making me feel uncomfortable. Worst of all, I actually felt sorry for myself. I wondered what was even the point in trying. I was just so beyond tired of fighting.

However, several days into my stay, my SMA critical care specialist walked into my room, his eyes wandered around, and he spoke the most simple, yet powerful, words that suddenly changed my perspective. (To this day, they still resonate with me.)

He looked at me and said, “I know this isn’t fun. You’ve been sick for awhile, haven’t eaten in days, and have a really uncomfortable tube up your nose and in your stomach. But, it’s 2 p.m., and it’s pitch black in here. Let the sun shine in. It’ll make you feel better.”

He walked to the back of my room, threw open the shades, walked back to me, and said, “I know this isn’t where you want to be. I get it. But, I also know how strong and stubborn you are. So, promise me you’ll keep those shades open, and I promise you’ll be out of here soon.”

My doctor was right. I was strong (and stubborn as hell), but I had somehow allowed circumstances that were out of my control to control me. For the first time in my life, I felt like a stranger in my own body. I wasn’t that girl nor did I want to be her. And, as the sun began to radiate into the cold, dismal hospital room, I began to feel lighter — a shift of energy began to take place. That was the moment I realized my thoughts and feelings needed to change. I needed to stop playing the victim and start recognizing the resilient power I had hidden inside of me.

Of course, it’s important to let your negative emotions ride out. Scream, cry, feel sorry for yourself, and just plain ol’ hate life. Be bitter. Be angry. Be anything you feel like being because you’re entitled to feel whatever it is you want to feel. But, I think there comes a point when you have to realize that these emotions you’re feeling are not in control of you. Instead, you are in control of them. Knowing this, I came to realize from his advice, is the foundation for overcoming any and every “storm” of life.

Storms, just like pain, are messy, but that’s just their nature. They wreak havoc, cause destruction, and do everything in their power to destroy what once was. Every now and then, getting caught in the middle of a storm is a fact of life, but fortunately, storms don’t last forever. The raindrops will taper, the clouds will begin to part, and the sun will start to shine again. Only then will you decide to rise above those negative feelings.

And, only then can you decide to open the shades and realize you are strong enough to let the sun shine in again.

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Thinkstock photo by LucidSurf


 

The dictionary defines the word “relationship” as “The way in which two or more people or things are connected, or the state of being connected.”

I, like many people in their mid-20s, have had a few groups of close friends, and some that naturally grew apart. My relationship with my friends began after starting university, and has developed during the years since.

This “close” friendship group had supported each other and developed or changed to include some of us traveling, some moving away, and even a couple of kids. We were friends first on common ground — we liked the same music, same dingy clubs and pubs, shared views on most things, and for those we didn’t, we enjoyed hearing the other’s opinion. In others words we were able to relate to each other — pretty witty, yes?

In addition, I am the kind of person that would do everything in my power to make others happy. I am naturally a people-pleaser. In the past I’d happily go along with or often facilitate or organize a large chunk of the social events within my circle.

The last couple of years have been hugely difficult for me personally. My journey to diagnosis and trialling treatments has been a rocky one. My chronic illnesses for has made the cracks in our foundation evident in a way that not even arguing over pizza toppings could. I have grown apart from a couple of my previously closest friends. Other members I have grown closer to, but in a “we avoid talking about your problems” kind of way. I have also found solace and formed new and sometimes distant friendships with those living with health issues of many kinds, in other words people I can relate to in my “now.”

Those I have grown apart from, the “closer ones” I could blame on my inability to socialize as often or reliably as I once could. Or I could blame my comparatively quiet days and the result being I miss out on events such as festivals or nights out.

But it’s all that and more.

Chronic illness has taken over every aspect of my life. It has slowly but surely impacted my very being. There are the more obvious such as not being “fit to work” at present, meaning I’m reliant on my partner and family. I don’t have the income to join in costly events of my working friends. I cannot always leave the house without significant distress or difficulty, which makes socializing more complicated. The unpredictable nature of my illnesses mean I am not always able to commit to or honor plans with my loved ones.

And if I’m being totally honest, I sometimes just don’t feel like it. Sometimes my overwhelming fatigue and pain make the idea of leaving the house about as attractive as a dental appointment. Sometimes I just want to sit and read or try to relieve some of my symptoms with stronger painkillers and a hot bath or blanket fort.

The reason the above is important is because unless you have experienced a long-term illness or condition, it makes it hard to comprehend or sympathize with on a long-term basis. It is something solitary in my group of healthy friends. Sometimes my pre-emptive decline of offers which are beyond my realms of reality at the moment have caused bad feelings — more so than those I have broken my commitment to at a later date. Some conversations have resulted in arguments as my friends find it hard to relate to my situation. They now find it hard to relate to me. They have admitted suspecting I am using my conditions as an excuse to not want to partake in something or as a reason to see them. In other words the lack of ability to relate to my situation seems like a personal thing for them. They may feel tired, stressed or a bit off, yet they are still always able to make plans, so why can’t I make the effort?

Because “I can’t” is a viewed as wobbly “excuse” from the outside looking in.

Maybe on occasion I would have agreed with them if I was sitting on the outside.

Maybe.

Living with chronic illness and maintaining relationships can be a minefield. And in my experience I have spent a long time dodging ammo, desperate to explain or defend myself, and make others view me in a positive light. It’s exhausting, and unfortunately on the whole not that effective. The change in me has made it harder for others to relate to me. I wholeheartedly feel this is the root of the issue. And this is the one thing I cannot change. My life, body and mind have changed. Some changes obviously are for the worse, but others maybe for the better. I have learned more in the past few years than I ever thought possible, learned to respect my own needs and others’, and also developed an understanding of the fluid nature of life. Yes I’m down at the moment, but the small “ups” such as enjoying a coffee out the house now seem so much sweeter. My world may be tons smaller, but it’s also more real for me.

Please try to remember if you are in love, friends with or a colleague of a some living with chronic illness, you may feel the impact of their illness acutely. You could feel disappointed, frustrated, angry even, but believe me when I say the one living with the illness feels this chronically. Probably every day.

I ask if you cannot relate to it, just to let it be. Please don’t add to the burden of guilt and sadness by poking and pulling at the person in question. For me personally it’s taken a huge chunk of time and tears to realize that although I would never have chosen the decline, that actually it’s OK. If we cannot relate or empathize then maybe the relationship may also need to take a break or step sideways. It doesn’t mean the love isn’t there. And if you are part of a relationship that has endured the challenges of chronic health issues, I have nothing but respect and admiration for that.

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Thinkstock photo by Thomas_Zsebok_Images


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 hereThis piece is based on the experience of individuals. Please see a doctor before starting or stopping a medication.

There’s a stigma that anyone who uses marijuana is just trying to get “high.” But that characterization isn’t exactly fair when it comes to medical marijuana. People with chronic health conditions may use it to treat pain, nausea and other debilitating symptoms — getting “stoned” is not the goal.

Labeling medical marijuana users as simply looking for a high adds to the stigma, making it more difficult for people with chronic illnesses to try it and see if it helps relieve any of their symptoms. So we asked our Mighty community to share why they’ve tried medical marijuana and how it affects them. Hint: it’s about treating illnesses, not searching for a high.

Here’s what our community told us:

1. “I use it because it’s safer and more effective than medications I’ve tried and comes in a number of useful preparations for all of my needs. Apart from Fentanyl and Tramadol (which gives me night terrors), cannabis is the only thing that has helped relieve pain (nerve, muscular, surgical, etc.). It has also been excellent for almost all of my other issues: insomnia, nausea, lack of appetite, depression/suicidal thoughts, anxiety, etc.”

2. “I’ve had three brain tumors as a result of pituitary Cushing’s disease and kidney failure so it has helped me with my headaches, nausea, pain, sleeping, appetite — everything. It also helps keep me calm which keeps my cortisol levels fairly in check. People think I’m joking when I say I would be dead without it, but I couldn’t be more serious.”

3. “I started because of endometriosis and really bad cramps. I then started having digestive issues. Ended up diagnosed with Crohn’s disease in October 2015. Cannabis helps with pain and nausea that Crohn’s, and the medications I take to treat it, give me. Broke my ankle two months ago and been using higher CBD cannabis to help the inflammation, pain, and swelling… I use vaporizers and make edibles. The edibles last longer pain-wise and help out my guts keeping inflammation down. Added bonus side effect: helps my anxiety out.”

4.I use it as a topical and I smoke. I like using the topical for my joint pain and back pain. It really does help. And you can get it without THC if need be. I smoke it with THC to help me sleep. It works so well.”

5. “The only cannabis I’ve had access to try is grown for recreational use to get people high, and that worsens my pain. It’s horrible. It would be awesome if the medical stuff actually helped but maybe I have the wrong brain chemistry. I wouldn’t know because it’s not available where I live… so far my experience with marijuana has only been negative… I’m glad it can help some people with chronic illnesses though.”

6.I am not pharmaceutical friendly (I have bad reactions to many prescriptions) and this seemed like it was a healthy more effective way of getting pain relief and helping many of my symptoms from my Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome that include seizures, fainting, tachycardia, pain in almost all my joints and bones, shaking, and many more. Marijuana helped more then any other medication I’ve been on.”

7. “I have been using marijuana regularly since I was 19 and had kidney failure. It assisted with pain management from surgeries, eased my mind from anxiety, gave me back my appetite and gave me the comfort I needed in a very uncomfortable situation. Vaping concentrates is my preferred method to avoid smoking while getting a quick dose of cannabis.”

8. “I was taking three different pain medications and they weren’t doing much other than taking the edge off. With marijuana I’ve noticed huge improvement with daily pain, as well as my mood and general outlook on life! I actually feel hopeful again.”

9. “Sadly, I tried it and it did not help me. I tried different plant types and different forms. I always had a bad reaction. Made my limbs feel like they were on fire. I also had a bad episode with a brownie… hallucinations. Never again. Tried the CBD oil drops too. It did nothing for pain but just made me numb. I still felt the pain pushing through. I am not against it if it helps someone in tremendous pain. For me it was a bad experience.”

10. “I use it for migraines; it changed my life in a positive way. Pain was less and less every day. Finally after 21 years of daily pain I have control over my life.”

11. “I have used medical marijuana several times and several different strands and in several different forms. For me, it didn’t work at all. For the amount of money it was costing me out of pocket it was not nearly worth it. I do know it does work for people though and power to them. I really was hoping that it would work and it would help me get off of my narcotic prescriptions. I just wasn’t one of those people unfortunately.”

12. “It doesn’t work for my pain at all, gives me terrible anxiety, and makes me non-functional. I get frustrated because no matter how many times I try different kinds in different forms people never fail to tell me I just haven’t tried the right strain or type in the right form. Plus, it’s very expensive. I have no income and am disabled. I couldn’t afford it even if it did work. I’m totally pro marijuana and I fully support its use and legalization, but it’s really frustrating when everyone treats it as a cure-all magic drug that works for everything and everyone.”

13. “It allows me to relax the muscles and joints that are in constant pain. I can sleep, eat without having the stomach issues and I feel more like the old me before my body was invaded by these autoimmune issues.”

14. “Tried CBD, it did nothing for my pain. I was disappointed and was hoping something could give me some kind of relief but I guess I wasn’t lucky enough in the dosage I was at. Just gave me terrible dry mouth.”

15. “I have used medical marijuana for nearly a decade because it is by far the best medication for my fibromyalgia pain, as well as helping to relax my body enough to be able to sleep. I honestly don’t know if I would still be here if it weren’t for this remarkable miracle plant.”

16. “I have Ehlers-Danlos syndrome so there’s a lot of chronic pain and chronic fatigue (lots of other stuff but that was the basics) and the few times I’ve used medical marijuana I was able to be productive, cheerful, and active for days and days afterwards even after only using a little bit of medical weed.”

17. “I tried it because I wasn’t getting any help from doctors as far as pain relief for quite some time. Decided to try smoking marijuana after advice from several people. I thought it may help my anxiety as well, but it didn’t help anything at all. I was just more tired. I also tried lollipops with hemp, but they didn’t help pain either.”

18. “I have endometriosis and fibromyalgia. Lyrica and the other approved drugs for fibromyalgia never helped me and I cannot take ibuprofen because of high blood pressure. Taking a 10 mg 1:1 pills every eight hours is the only way I can be remotely functional during my period. It’s also helped me combat painsomnia.”

 


The cold sensation of porcelain greets my lingering nausea. My Saturday mornings are quite similar to many teens and young, college-aged 20-somethings, minus the fond memories of the raging party from the night before. It is during these mornings that I occasionally wish my maladies were caused by an alcohol-induced stupor. These constant, lingering symptoms are not normal for people our age.

If you are like me, you have always been sick. From day one, your DNA held the predisposition to the testament that would be your life as soon as the faulty genes were set into motion. Things were bad when you initially became ill – or at least when symptoms first interfered with day-to-day living.

The beginning symptoms probably came on gradually, yet also so suddenly that you did not realize what was occurring until you were left mouth gaping, staring in utter disbelief at your own body’s betrayal.

Medical portions of your life quickly obscured the non-medical, but you found solace in work, school and active hobbies. You repressed your emotions, not allowing yourself the luxury of feeling scared. You knew you could not possibly remain ill forever. It would go away.

There was never time to think. The appointments were many, the testing intense. Syndrome-this. Disorder-that. The medical jargon compiled in your file started making sense. The doctor prescribed another medication, the next chance for a cure.

It was on another trip to the pharmacy between outings and errands when you reflected on why your old coworker blatantly ignored you after witnessing that bad flare. Symptoms were growing increasingly difficult to hide. You wondered if you were well enough to attend class that day or if school would end up like the job you had to quit. You were angry that your best friends stopped calling to hang out. They could not accept your illness interfering, like all of the other plans.

Later, you unexpectedly faced a decline in your condition. It was a deterioration so severe that your previous health problems seemed minuscule in comparison. The doctor added the last diagnosis to the list while you yearned for the state of health you had prior to your illness progressing. You regret the experiences postponed for “when I get better.” You would happily settle for your old, somewhat functional sick again.

Now, you let yourself go there. You are struggling to adjust to the dizzying world of pain when you only want an average life filled with the usual teenage clichés. You also know that as you approach mid-adulthood, you will want the normal life then too – a completed college degree, stable career, family and maybe children.

That intense need for that normalcy does not dissipate. Eventually though, you become skilled in navigating life with a chronic illness. You forgive past friends for their abandonment and appreciate those who stayed by your side. You find coping methods and a medication or two that make symptoms tolerable. You cherish fun opportunities whenever you can.

teenage girl lying in the grass and laughing

You are doubtlessly scared. And rightfully so. I was as well, and honestly, I still am. Life definitely loses the typical definition of normalcy once chronic illness moseys its way in. However, your feelings are totally normal. The normal in chronic illness is that there is hope in creating and accepting a new “normal” with even more purpose and potential than before.

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There’s a really funny video going around – a parody of the show “House Hunters” that’s called “Church Hunters.” Watch it here. In this video, a couple is trying to find the right church for them, and it parodies modern church, parishoner-centered, experiential-culture.

Now, if you’re someone who is religious and attends church, you probably had a good laugh at this, because you know that there’s so much more to church than this. Church is about way more than what a church has to offer: it’s about what the person who attends church can bring to a church, too. Everyone has their own gifts. When the right church for the right person combine, it’s a beautiful thing, because the person brings their talents and makes the church a better place, and the church makes the person a better person, and I believe together they are truly able to advance the kingdom of God and be the hands and feet of Christ.

But what happens when mental and chronic illness are brought into the body of Christ, which is the church?

I believe wholeheartedly that the church – both the whole, universal church, and individual churches which are all supposed to be little branches of the church universal – are all the body of Christ, and every single member is made in God’s image. That’s right, every single member. Sometimes, all members aren’t treated that way, and it breaks my heart.

I believe if Jesus lived today, he would be appalled by how many churches treat people with mental and chronic illness. They are often rejected, stigmatized, left behind, and ignored. Because of this, many people with chronic and mental illnesses, which are often invisible, hide their illnesses from church communities, which are supposed to be places of love and mutual help and support but in my opinion more often become a place of judgment and dressed-up facades. There are many churches that do strive to do better, though, and I hope everyone with a mental and/or chronic illness finds one.

I haven’t been in the position of trying to find a church family to belong to for a while, and it’s especially complicated for me because I have my master’s degree in divinity and have worked on staff of several different churches. The last few churches I have been at because they’ve hired me. I have learned a lot and benefitted a lot from all these churches, but I never really “church shopped,” or looked for a church that I will attend, not work at, that will not only best fit mine and my family’s needs, but also that I can contribute to and help through my gifts and talents.

Since I have last looked for a church, years ago, I have received several diagnoses that might not define me, but definitely affect how I view the world, and myself. These include bipolar II, Ehlers-Danlos syndrome, PTSD, and mast cell activation syndrome, adding to the Chiari malformation, generalized anxiety disorder and panic disorder I was already diagnosed with. My health has deteriorated, and it affects how I act, including in church. This makes me have several considerations as I consider finding a church that will accept me for who I am and that I can give my gifts and graces.

First of all, is it a church that generally is accepting and understanding of mental health? I know lots of churches that get very squeamish around discussions of mental health. They see anxiety and depression and other illnesses as sins, not disabilities, and they do not take the time to understand them correctly. Is it a church that wants people to sweep their mental illnesses under the rug and be their polished, prim, dressed up “Sunday selves?” Jesus didn’t deal with “Sunday selves.” He dealt with prostitutes and tax collectors; widows and orphans. He loved people the way they were, and called others to do the same.

I want a church where I can be open about my anxiety, panic disorder, and bipolar II, and where other members feel open about theirs, too. I want a church that advocates for inclusion of people with mental illness in their church and other churches and sees them as an essential part of the body of Christ. I can help with this, but I can’t do it on my own. It has to be a whole church effort.

And generally, how is the church with chronic illness? Is it the kind of church that only is comfortable with illnesses that are neatly resolved after two weeks of prayer? This sadly happens more often than you think, and at many churches I’ve seen. These churches preach the power of prayer, and say if you only pray hard enough, you will be healed.

But I don’t believe that my chronic illnesses will likely be healed. They are genetic and lifelong. And while I believe God is a God of miracles, I don’t think curing my Ehlers-Danlos syndrome, Chiari malformation, or mast cell activation syndrome are likely miracles God is going to perform. I will likely have these illnesses for life, so what I want from the body of Christ is prayer for management of symptoms, help when the symptoms flare up badly, and most of all, love and understanding, rather than judgment and bewilderment. I want a church where they help put my daughter’s coat on when I had to sit through all the hymns because my hips hurt too badly to stand, not where they look at me judgmentally because I seem too young and healthy looking to be ill. I want a church that understands I have good days and bad days, and that I might have to call off volunteering for a Sunday because of a flare, but I will try my very best to be there. And I want a church that will still let me help; I may have sicknesses, but I am passionate about helping children develop lifelong faiths, and I am very good at what I do, even if my health sometimes gets in the way of that.

I know not all people with chronic and mental illness are religious, and even if they are religious, maybe they do not attend church for various reasons. But for me, church attendance is very important to me, and I want to find a church where I can be open and help them be the hands and feet of Christ just as much as they help and support me. We don’t have any family in the area, so it’s important for me to find a church to be like family for us.
I have found a church that seems promising, but I have only visited a couple times, so I will have to keep going and see what God has in store for me!

Until then – and past then – I plan to keep being an advocate for Christians with mental and chronic illness because they bring so much richness and value to individual churches and the church universal.

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Thinkstock photo by Jose antonio Sanchez reyes

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