How Chronic Illness Uprooted My Sense of Security

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Security. It is something we cling to, a stabilizer that offers us a modicum of peace and comfort in a world that is in continual turmoil. The placement of our security is as vast and varied as the human race, yet the desperate need for it in our lives remains the same.

In the frailty and unpredictably of life, we tend to place our security in temporal, fragile entities – hopes and ideals and expectations that are not promised to us, and yet we await the assurance that all will be well and remain.

 

Chronic illness has a way of uprooting security. Security found in relationships, in health, in finances and in the future. Slowly, it rips the rug out from under you.

The security of relationships ebbs away as they quietly fade into the background, unwilling or unable to walk with you in your new life.

The security of your personhood and who you were falters and sheds itself and out emerges a new identity, a person who said goodbye to the “I used to be” and became something wondrously and terrifyingly new.

The security of finances and the tangled web of all it touches rocks your world. Often faced with losing careers and incomes, it is painful to reconcile living a life that is given and taken away by individuals who do not know you and who do not walk in your shoes. While new careers and incomes can be carved out of this new life, it still brings a shaky lack of security. The future of chronic illness is always changing, like a horizon whose fragile paintbrush dips and colors the sky with an ever-changing hue.

Unpredictable, chronic illness uproots everything you once held dear. It tests and pushes boundaries and demands a fight, not just for your physical survival, but for your emotional and mental well-being.

Even in our diagnosis, for those blessed enough to have them, there is a waxing and waning of security in those who care for and treat us, in the long, laborious road of tests and pills and therapy and hospital rooms that echo your heartache.

Security, I have learned, cannot be rooted in the temporal foundations of man. No. It must be anchored where foundations do not shake.

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Thinkstock photo via fizkes.

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What I Want Educators to Know About Their Students With Chronic Illness

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Growing up, I had always known teachers as the people at school who would advocate for me just as my parents would. For the first half of my educational career, before my illness, I was lucky to have teachers who aided me in my journey towards my goals. In my mind, teachers had always pushed me to be my best, helped me to learn to take responsibility for failures and guided me. Until I was diagnosed, I never realized there were sometimes teachers who didn’t help students in the way I had always known them too. It became much more apparent when I first became sick.

 

To my high school principals:

I understand and could never think about how hard it is to run a school full of adolescents on the brink of adulthood. Monitoring kids at an age where their world is changing at a fast pace must be difficult and stressful.

I understand I was not above any other student in school – I didn’t want to be.

I hope the next time you come across a student who is facing a major life change such as an illness that you will not assume they have “school phobia” or are trying to get out of classwork. This is a scary time for them, and I hope you can see that.

I hope you learn that sitting them in a conference room and insinuating that laziness and fear are the roots of the problem is embarrassing and humiliating to someone whose life has been life turned upside down.

To my freshman year professor:

I realize you may have been facing some challenges yourself in life. Since my diagnoses, I have learned firsthand to never underestimate what someone is going through. You will never know what is going on in a person’s life just by looking at them.

I understand I am an adult, and therefore should be held accountable for my work and actions. But, on the day I brought in a hard copy of my assignment, instead of emailing it, I hoped you would be understanding. I asked for compassion when I realized my mistake. I hoped that when I got back to my dorm room I could send you an electronic copy as well.
You did not accept my printed assignment and instead belittled my memory in front of the class.

Even when you knew I had chronic fatigue syndrome and POTS after I did a presentation in class about how something as simple as walking across campus can trigger my symptoms, you forced me to spend most of the 50-minute class running back to my dorm on the opposite side of campus to email you my paper so I would not fail.

I hope the next time you come across a student whose brain fog got in the way of the directions that you will have more compassion. I hope you will still hold them accountable, but not chastise them for something they cannot control. I hope you don’t use your power as a professor to demean students who are struggling and make them seem as though they are trying to get around the standards other students are set to.

No one should feel they need to hide their illness or be afraid to ask for help when needed because they are scared to look like they are trying to get the easy way out.

To all educators:

Thank you. Thank you for signing up to inspire and teach and grow every single student you encounter. I know you come across thousands of students in your time as a teacher and take care of each one as if they are as special as the last. I want you to know that to a chronically ill child, a teacher who gives them the tools and encouragement to succeed can change their outlook on life.

To all students facing chronic illness:

If you have had who educators failed to help you during times of need, don’t blame them. Spread awareness. Use your voice, because sometimes they need educating as well.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via KatarzynaBialasiewicz.

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Why 'How Are You?' Is Such a Difficult Question to Answer

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“How are you?”

A question that seems simple enough to answer. It demonstrates that someone cares. It should be a nice thing to ask someone.

But I never know how to answer.

It’s a question I dread. If I’m asked in person, I sometimes smile and say, “Yeah, I’m fine,” and other times I just shrug my shoulders, not wanting to answer. But also not knowing what to say.

When someone sends me a text asking me how I am, I ignore it for a while. Anxiety fills the pit of my stomach as I try to think of some way to answer it. I leave it unread until I have an answer formed and ready to reply with, but I dread responding. What if someone prods for more information?

How do you answer that question when you can’t make sense of how you are yourself? How do you answer it when most days are bad days and it’s a struggle just to make it through? I worry that if I always say I’m not doing too great, it desensitizes what I’m saying and people will think I’m being overdramatic. But it’s true, most days lately are not-so-good days and its a struggle.

Some days it is just easier to say I’m fine and nod. Other days I can’t bring myself to lie because I don’t have the physical or mental energy to. I say I’m struggling, in pain or that I don’t know how to answer it. And people always respond with, “I hope you feel better soon.” Again, it’s supposed to be nice and reassuring, but I feel more upset knowing that I won’t be all better soon. The whole conversation reinforces my concerns.

Hearing, “How are you?” reminds me that I’m struggling and when I don’t know how to answer, I feel pathetic. I don’t know whether to be honest with you or to “put on a brave face” when you ask me. I often want to scream out that I woke up this morning disappointed that I woke up. I want to tell you that every inch of me hurts and I don’t really know why. I want to tell you that I feel let down by the medical system. But I also don’t want to scare you or push you away with the negativity I give off when I’m struggling, because most days, honestly, wouldn’t be met with a positive answer to, “How are you?” I live with several chronic illnesses and health conditions, as well as mental health conditions. I’m, alive I guess. I’m not living, but I’m alive. I’m surviving, not thriving.

I appreciate you caring enough to ask, so I truly am sorry if I don’t know how to reply to, what should be, a sympathetic and simple question. I don’t always know how I’m doing myself, and that’s even harder to explain to someone else.

Many people living with mental and physical health conditions won’t mind being asked, “How are you?” but in case someone else out there feels the same as me, I want them to realize that others dread that question, too. Or aren’t sure how to answer.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on The Invisible Hypothyroidism.

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26 People Describe What It's Like to Experience 'Poopsomnia'

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When chronic illness affects your gastrointestinal tract, it doesn’t just cause issues during the daytime. GI symptoms such as constipation, diarrhea, bleeding or cramping may often flare up during the night, keeping you awake and running back and forth between your bed and the toilet –otherwise known as “poopsomnia.” While this may be common for GI disorders like inflammatory bowel disease (IBD) or irritable bowel syndrome (IBS), it can be caused by any number of illnesses.

Although it can be awkward and difficult to open up to friends or coworkers about personal “bathroom issues,” the reality is that issues like poopsomnia can have a significant impact on many aspects of a person’s life. We shouldn’t have to feel embarrassed to talk about symptoms that are beyond our control.

To better understand the many ways this issue can affect people’s lives, we asked our Mighty community to share what it’s like to experience “poopsomnia” because of a chronic illness. Do any of the following sound familiar to you? Let us know what your experience with poopsomnia has been in the comments below.

Here’s what the community shared with us:

1. “A good way to explain it to someone that doesn’t have it would be: when you have a flare-up, it’s basically like having a stomach virus that doesn’t go away.”

2. “When I was so sick with ulcerative colitis that I would poo around 30 times a day, some of that was during the night when I should be sleeping. To be rudely awakened by your colon with intense pain and sudden urge is an indescribably scary [thing] you don’t ever want to experience.”

3. “Poopsomnia is hours of mindlessly scrolling through Pinterest, being able to get from your bed to the bathroom in less than five seconds and with your eyes shut, having a sore bum from sitting there so long, and trying so hard to not fall asleep, even though you know if you get off and go back to bed you will end up back at the toilet in 20 minutes anyway.”

4. “I keep my bathroom stocked for every/any occasion.”

5. “It’s not just physically exhausting, but mentally as well. When you haven’t slept through the night in a year, it starts to affect you – you become short-tempered and moody. It affects those around you and not just you.”

6. “People don’t think IBS is any big deal, but they don’t live with it, they don’t understand how many ways it affects your daily life. People don’t understand how painful this is, how much you think about it, how much your life revolves around it, how you feel sick and/or in pain almost constantly, how you’re almost always left in a state of frustration, how sad and isolated it can make you feel.”

7. “During bad flares I just sleep on [the] couch so my bathroom antics don’t wake my husband.”

8. “It’s the frustration of thinking you’re finished, getting up, going back to bed then just when you’ve gotten comfy, the cramps start and you need to head back to the toilet.”

9. “When I’m in a flare-up I might as well move my office into the restroom, because I’m never out of it long enough to get anything accomplished. (Like right now!) And after a day or 10 of constant crapping, I am so weak and tired I can’t function, which usually triggers an autoimmune response and I get another illness, like pneumonia. Good times.”

10. “When people tell me they poop once a day, I cry from laughter.”

11. “Poopsomnia made me start wearing men’s boxer briefs to sleep in because washing the sheets every night, in the middle of the night, was exhausting.”

12. “It is feast or famine with gastroparesis and my meds regime. I either go 12 times in a day or every three days, even with stool softeners and walking. I have literally slept on the toilet before.”

13. “The saying ‘you can’t trust a fart’… yeah, well, it just got even worse. You can’t trust any movement your body thinks it should release while sleeping. Makes it even worse when you have insomnia and have a poopsomnia moment of panic, but being drugged to sleep is like a 90-yard dash in slow motion to try and get to the toilet. Even worse when your dog is trailing behind trying to make sure everything’s good but being another road block. You never know when it hits you.”

14. “It’s awful. You’re not only so tired you don’t want to get up but you also have lower abdominal pain if you try to wait. Running back to the bathroom every 10 to 20 minutes is a real pain in the butt… literally! By the time I get to sleep it’s like I’ve been asleep for five minutes.”

15. “I have IBS and interstitial cystitis so I have peesomnia as well! When I feel like I can finally climb into bed, pull up the covers, close my eyes and sleep, it’s time to run to the bathroom again.”

16. “It’s like your illness doesn’t want you to rest. You are already exhausted for having spent all day on the toilet, you hope to fall asleep and, just like the postman, ‘Knock knock! I’m here and I want your attention! Time to run!'”

17. “You know you have poopsomnia when you get tired of getting up every half hour to ‘go’ again so you decide to save yourself the trip and just go back to sleep while still sitting on the toilet. In theory it seemed like a good idea until you’re jolted awake by the sudden feeling like you’re falling and you can’t stop yourself (I hate those dreams) – but in reality you were really falling… right off the toilet!”

18. “When my endometriosis gets really bad I can be up all night in the bathroom trying to find relief, tossing and turning from stomach cramping. Getting maybe an hour of sleep, then having to get up at 5 a.m. to get ready to go to work. It’s exhausting and you can’t exactly call in to work, ‘Hey, sorry, I can’t come in, I was up all night trying really hard to poop!'”

19. “It’s knowing some days you probably can’t go out or work because you need the restroom close – anywhere from a few minutes to less than an hour or two. Or you just had no sleep the night before [and are] possibly dehydrated as well.”

20. “Mine always seems to like to strike when I get into bed. Relax for five minutes and boom, stomach turns over in that way that means ‘get to the bathroom now,’ and then it will do that up to 10 times in a row, maybe with 10-minutes breaks.”

21. “The poopsomnia is bad, but even worse is getting up at 4 a.m. when I work at 8 just so I can start trying to prepare my bowels for work. Then still being late to work because four hours isn’t enough time to make my body cooperate.”

22. “I have had ulcerative colitis for 24 years, and I have struggled with this every… single… night. I’ve tried to stop eating so close to bedtime, taking anti-diarrheal medications (over-the-counter and prescription)… Nothing helps. I’ve even tried sleeping pills but that results in an embarrassing accident because I’m so medicated I don’t wake up to use the bathroom.”

23. “I worry all night about finding that balance of being relaxed, but not too relaxed. The worry is a cycle, and after 24 years my body is responding to sleep like someone might respond to aversion therapy. My body craves sleep – but the pain or urgency kick in and remind me not to relax completely.”

24. “You might think, ‘Oh, it’s not a big deal.’ [But] it’s not one night of running to the bathroom. It is every…single…day…forever. Not sleeping properly doesn’t help our bodies. It doesn’t allow our bodies to repair themselves properly.”

25. “[With] my medication Metformin, I go through phases, mainly when my dose is changed, where the flood gates open and I’m up…all night. I have slept on the toilet before. Or I’ve worn a diaper to get some semblance of sleep.”

26. “I never thought something that made me so frustrated could have such a funny name.”

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Coping and Self-Care When Your Child Is in the Hospital

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When your child is sick in the hospital, it can feel like you’ve entered an alternative universe. That heartache hit me like a tidal wave while caring for my desperately ill son in two children’s hospitals for eight months straight in 2015. Scared witless as Crohn’s disease spread inflammation throughout my son’s digestive track, all I could think about was how to ease his suffering and make him well again. Time was marked from one nursing shift to the next rather than normal day and night.

I admit it. When the flight attendant says, “If you are traveling with a child, please be sure to put your oxygen mask on first so you can take care of your child properly,” I am the mom you would find passed out in the aisle. Because there is no way I can imagine not putting the oxygen mask on my son first.

My instinct will always be to care for and protect my son first and foremost. When he is very sick in the hospital, I am laser focused on making him well to the point of exhaustion. But I’ve learned the hard way I have to somehow fit in some self-care and coping strategies or else I hit a wall of stress implosion. Not pretty.

Taking care of a sick child in the hospital is physically and emotionally exhausting, so be kind to yourself. To make it through the caregiver marathon, you need to try to keep up your strength and pool your energy. Here are suggestions for coping, trying to keep your spirits up, and taking care of yourself as the parent.

Getting Support

It was hard for me to admit I needed help. I felt like I was bothering or inconveniencing people by asking for anything. I confided my internal struggle to my wonderful Rabbi, Robert Nosanchuk, of Anshe Chesed Fairmount Temple in Beachwood, Ohio. He wisely asked me if I would hesitate to do anything I could for someone I care about going through something similar. Did I really think I could manage without having help? And what’s the point of having a community if you don’t share the tough times as well as the good times?

So turn to the family and friends you are closest to who are truly supportive. Be honest with yourself about who will be really helpful and make you feel better vs. inadvertently make things harder.

Welcome offers to help with food, keep an eye on your home, run errands, take care of your other child(ren), etc. For food, politely mention food allergies, being vegan or vegetarian, or keeping kosher so people don’t unknowingly prepare food your family cannot eat. If someone asks how they can help, mention specific ideas appropriate to your relationship, like would you mind bringing me a salad or picking up a couple of things from the grocery store vs. could you please stay with my child for two hours this week while I take a nap.

 

Taking Care of Yourself

Try to find a time each day to leave the hospital floor when someone else will be with your child, even if it’s just to take a walk on the hospital main level. Some fresh air if the weather allows is priceless. Exercise can be very cathartic and clear your mind.

Sleep is at a premium in the hospital, what with those endless middle of the night vital checks and background sounds and beeps along the hallway. So sleep whenever you can, taking turns if you have a partner, family member or friend you can switch off with. If sleep eludes you despite your exhaustion, it’s undoubtedly the stress and emotion that can hit hard when you least expect it. Try relaxation approaches like curling up with chamomile tea and soothing music. Then just close your eyes for a few minutes and you might be surprised how soon insomnia turns into well earned sleep. I always set the alarm on my iPhone for the amount of time I had allotted while someone else was with my son so I could sleep without worrying I’d be late to get back to the hospital.

If you experience any health symptoms or issues while you’re in the hospital for your child, be careful not to ignore important signs. Be sure to stay on schedule with any regular medications you normally take. If you develop a major problem that could have been avoided by keeping to your normal health care routine, you not only risk your own health, you could impact your ability to be an effective caregiver.

Coping Strategies for Your Heart and Mind

  • Think of quotes or sayings you can use to help you get through the day. One step at a time, one day at a time. Post some favorite quotes in the room that give you comfort. For example, one of mine from Christopher Robin is: “You are braver than you believe and stronger than you seem.”
  • Consider journaling, whether privately or through a website. Writing can help you express your feelings and articulate your worries which can be very cathartic. A website like CaringBridge or CarePages can give you that outlet while keeping friends and family up-to-date in a private community setting.
  • Try to find humor wherever you can. Your sense of humor and positivity can relieve stress, keep your perspective and help your child cope. When my son kept getting re-admitted to the hospital multiple times, I would make a game of coming up with the silliest jokes and wisecracks on the first day to help us both keep our spirits up. Laughing is therapeutic. This might be the perfect time to stream a goofy sitcom or an old “Abbott and Costello” or “Three Stooges” movie.
  • Whether deep breathing, spirituality, praying or meditation give you comfort, use them to keep your spirits up and get some rejuvenation and keep your sense of peace and hope. If you belong to a church or synagogue, let them know your child is in the hospital so the clergy may visit you and give you support. The hospital might have therapists and/or social workers who specialize in helping families cope with a hospital stay.
  • Seek entertainment to take your mind off things. Reading a mindless novel, stream a favorite show or play a fun game to distract yourself in short pockets of time between doctors, nurses, medical tests and caregiving.

Handling and Learning About Your Child’s Medical Issues

One of the hardest things is processing difficult news and understanding complex medical issues. Knowing how much my son was suffering, I didn’t want him to see me crying and scare or confuse him. When you feel emotion overwhelming you, see if you can take a walk down the hall to find a quiet place to think and cry. I asked my child’s nurse to keep an eye out for my son or did it when family was there so he would not be alone. I wrote down the top things worrying me and questions for the doctor. It helped to get the sadness out, take a deep breath, and then go back to his hospital room with a clearer perspective. Plus that list of questions gave me some feeling of control, like I could at least try to understand the situation and alternatives as best as I could.

Research the medical issues you’re dealing with but ask your child’s doctors to give you perspective since “Dr. Google” can give you very scary answers. I tried to only read very reliable sources (NIH, Mayo Clinic, national nonprofits related to my son’s disease such as the Crohn’s and Colitis Foundation), especially avoiding sites that were like infomercials pitching products or treatments that would magically fix my child for a crazy amount of money.

If you are dealing with a specific illness or condition, connecting with other parents who have coped with the same thing when their child was a similar age can be very helpful and reassuring. For example, I discovered wonderful Facebook Groups for parents of kids/teens with Crohn’s or Ulcerative Colitis, in addition to the nonprofit Crohn’s and Colitis Foundation. Once I shared what we were going through, I was grateful to some of our friends who connected us with people they know who had walked the same path. Whether as simple as emailing, Facebook messaging, chatting on the phone or meeting for coffee, hearing from parents who had gone through a similar journey was invaluable. Nonprofits dedicated to the specific condition can also be fantastic sources of information and networking.

What strategies have you found most helpful to take care of yourself through a hospital stay?

I know how hard it can be to live in the surreal hospital time zone. The world becomes the four walls of your child’s hospital room and hospital floor. It can be hard to keep perspective and hope for the future, especially when the prognosis feel bleak. With chronic illness or medically complex children, it is common to have up and down cycles with their health. We cherish the good times when we are at home and do our best to cope with the tough phases. I hope whatever you are going through will get better soon.

A version of this story was originally published on Gooseling.com.

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10 Strategies to Help You Feel Beautiful When You're Chronically Ill

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Let’s face it. It’s hard to feel attractive in your own skin when you feel like your body is turning on you.

If I am sick, I struggle with feeling beautiful in my own skin. I remember becoming sicker and sicker, and people would continue to tell me how great I looked. I’m sure I looked at a few of these people like they had three eyes. I may have looked great, but honestly at times, I felt like I was dying. That is the thing about having an invisible illness. There are times when it can all feel like a cruel joke.

It’s hard to feel attractive when you are crawling from room to room… or when your stomach is distended from gastroparesis… or when you’re throwing up because you are so dizzy and your blood pressure has plummeted… or when you are taking a shower and some of your hair falls out because you are not getting enough blood to your brain. It’s hard to feel attractive when your fatigue is so severe, you feel as if you have a never-ending case of the flu.

But in my opinion it is possible and it’s something that takes time and conscious effort. As I have learned to live with Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome, I have found that the following strategies often help me:

1. Find a purpose. When I am working towards something I feel really passionate about, I feel good in my own skin.

2. Give. When I am doing something for someone else, I can’t help but feel better about myself.

3. Have a sense of humor. Find a way to laugh at yourself. If you have to wear the horribly, ugly compression stockings that roll down the minute you get them on because they help you stay upright longer, make a joke about how sexy they make you feel.

4. Once in a while, get dressed up and strut your stuff. This year I have worn more dresses to school. When people comment that “I’m so dressed up,” I usually just shrug it off… but in the back of my head, I am more often than not thinking about the year I could not work and became so sick of the same few pairs of yoga pants I wore day in and day out. At times, you should not underestimate the power of a beautiful pair of earrings or a new shirt.

5. Accomplish a goal. Nothing makes me feel more in control of my body then when I accomplish something I have worked hard for, or even fought for.

6. When people tell you, you look great try saying thanks. And then believe them. They usually mean it, and are speaking out of love and kindness. This is something I continue to work on.

7. Do something for your body. Believe it or not, I have come to realize that it is not my enemy. It is begging to be loved and cared for; especially during my sickest times. Eat healthy. Drink a lot of water. Make a lifestyle change. Take a nap. Strengthen muscles… even if you have to lie on the floor to do so. I believe there is always some kind of exercise you can do to help your body.

8. Sleep and rest. Sleep is my best friend. I feel the best after I’ve had plenty of rest. People who know me best, know not to mess with my sleep.

9. Surround yourself with positivity. When you are around people who bring out your best self, it is hard not to let your light shine through.

10. Finally, practice positive self-talk. We are our biggest critics. Give yourself a break once in a while and tell yourself you are beautiful. This is the body you have for life. You can either choose to hate it or love it. Find the beauty within and love it to the core.

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