Dear Future Husband, From Your Chronically Ill Wife

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Dear Future Husband,

You’re probably comfortably settled in your bed right now, on your back with your hands tucked up behind your head. And you’re probably staring at the ceiling, contemplating work, school and other various complications of life. You may or may not be asleep, but either way you’re probably thinking or dreaming about your future. And while your thoughts are dancing through your mind, at this very moment, I’m thinking about you.

I’m fantasizing the first time we meet, our first date, our first kiss and every memory we’ll make thereafter. I’m questioning if I’ll ever find you or if you’re simply a distant dream. I’m lying in my cozy bed, wrapped in my comforting blankets, clutching a pillow close to me, wondering if you’re thinking of me too.

But future husband, wherever you are, and whoever you are, if you’re thinking of me, I bet you’ve never considered marrying a “sick girl.” You’ll never consider it until you meet me. And when you meet me, I hope you’ll be able to look beyond the disease and see the person who is so much more than the illness her body houses. Just know, chronic illness or not, I intend on being the best wife you could ever ask for, and I truly hope your intentions toward me are the same.

You should know it won’t always be easy. I suppose an undertaking as celestial as marriage is never easy, but I truly believe marriage is what you make of it, and what you put into it is what you’ll get out. I’ll put my whole heart and soul into our marriage. And through it all, I believe God will guide us. But before we dive into matrimony, there are things you’ll need to know. Marriage with a sick person is no easy task, but I promise I’ll make it worth your while, and I promise through it all, I’ll always love you.

Here are the things I want you to know:

1. You will not simply be my husband. You will be my husband, my help-meet, my caretaker, my best friend and the love of my life. The love I have for you will be eternal, whether I’m sick or not.

2. There will be days that I’m so sick, I can hardly get out of bed. On those days, I need your love and compassion. Please don’t abandon me when I need you the most.

3. There will be days I will need help doing simple tasks simply because my body aches with too much pain to accomplish things by myself. I’ll need help washing my hair, getting out of bed and walking. I’ll need your help. And as you help me, you will learn a lot. You’ll learn a lot about yourself, a lot about me, a lot about service and a lot about love. You will help me, and I will help you. That’s how I intend for our marriage to work. We will always help each other, no matter how large the task may seem.

4. There will be days when I’m in so much pain, I’ll scream in agony. Those screams will haunt you. Those screams are something you will never un-hear, but they will strengthen you.

5. There will be days you want to give up and the discouragement will be overwhelming. Never give up. I need your strength. I will be strong for you. I will always keep fighting for you. Please do the same for me.

6. There will be days when you feel like God has forgotten us. I promise you, He has not. I believe He is always there, even if we can’t feel it at the moment. Overwhelming peace and joy will enter into our lives even through our darkest times.

7. Always pray. Pray personally, and pray with me. Pray for me, and I will pray for you. When you no longer have the strength to stand, kneel and pray. When you feel incredibly blessed, kneel and pray. When you don’t know what to think or feel, kneel and pray.  Never stop praying, whether things are hard or not.

8. Never lose faith. There will be days when I need your faith, and days where you need mine. We’ll rely on each other. Suffering is never easy, but if we keep our faith, we can overcome anything and life will always have its joy and beauty.

I love you, my sweet future husband, wherever you are. One day your path will cross with mine, and our beautiful love story will begin. I can’t wait for that day. Prepare yourself. You might be surprised to find I’m your future wife, but I’ll always be the best I can be for you. Stay true to who you are, and always have righteous desires, and our paths will cross very soon. I will always strive to be the best friend, wife and mother I can be, even if I’m sick. I believe God has greater plans for me than this illness. I believe He has greater plans for us. Together we can get through anything.

Your Loving Future Wife​

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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The Don't Ask, Don't Tell Policy of Chronic Illness

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If you don’t ask, I won’t tell. That sometimes becomes the easiest way to dance around being in relationship with the healthy while managing chronic illness.  

Please keep in mind that this article is written with the very broad spectrum of chronic illnesses in mind, from mental health issues to debilitating and degenerative diseases. I’ve written this to both the ones who struggles with illness, and the ones in relationship with him or her.

I had some surgery recently, which was the result of one of those perfectly constructed domino displays where treating one problem led to another to another. Now, I’m smack dab in the middle of missing my “this is working” treatment protocol thanks to one more falling domino. I didn’t tell people other than my family, a sweet lady from church who prayed me through it, and a close friend who happened to be on the receiving end of my “help” text, scooping up my child from school on one of the days where a quick re-check turned into a three-hour doctor visit. I privately asked my pastor for prayer and gave him the date of the procedure, explaining I don’t share things on the prayer chain anymore because, honestly, it could be something every week.  

We must decide when and what is “big enough” to call in reinforcements. Doing that too often can cause our dignity to take a hit because we may not want to be the “needy” one, the reason for a sigh or roll of the eyes amongst friends, the “again?” burden.  

Most likely, the dear one reading this knows this scenario all too well; however, if you are outside of the chronic illness circle, you do not, will not, and should not (because I don’t wish this on anyone) truly understand the persistence of our illnesses or the ways they dictates our days.

This does present some challenges as I seek deep and intimate relationships with others. What do I share? When do I share? With whom do I share? How much detail do I share? How often do I share?

For those of us who are sidelined, social media can be this sweet connection with others in the outside world, yet at the same time, it can awaken a longing for the normalcy our friends enjoy. Jealousy can easily creep in like the sneaky sin it is, as we read of shopping, travels and schedules brimming with activities. She whispers, “Don’t you wish you could do that?” Judgement can raise her ugly fist when we read “woe is me” posts about passing and temporary illnesses. She shouts, “Are you kidding me, you don’t know how much you should be thankful that all you have is a sore throat, wake up!” Next, comes Resentment or Resignation, whichever you allow to take hold.  

For my fellow CIBs (chronic illness buddies) and those of you who rub shoulders with us, I want to propose that Resentment shows up loud, proud and aggressive. She is in-your-face opinionated and speaks unapologetically in negative tones. She is angry at living a life she didn’t chose and has not yet embraced any beauty from her ashes. Her unresolved anger at God for allowing her suffering may spill into her everyday relationships with fellow humans. She fights a losing battle, exhausting all of her limited emotional and physical resources, against a life lived with limitations she doesn’t want. Resentment is just plain stuck in the mud of self pity.

Resignation, on the other hand, is more composed…. quiet, actually. She has come to a place of acceptance. She may even be able to look for the hidden blessings in her situation. Healthy Resignation has to be true. It isn’t resignation if it is pseudo-acceptance. That, my friends, is the sin of manipulation.

I believe Healthy Resignation speaks softly from a place of embracing the path God has allowed and trusting in his sweet promises every stony step of the way. Resignation is not superhuman, but I believe she rests in the one who is.

So, back to the Don’t Ask, Don’t Tell policy… yes, I am aware of the drain that sharing my daily battles would place on my relationships with healthy friends and family. When you ask how someone with chronic illness is doing, they must immediately weigh out 1. Do you really want to know or are you being polite? 2. Would you understand the medical jargon I would need to explain it in? 3. Have I recently burdened you? 4. Is this the time or place for this conversation? 5. If I tell you the truth, will you pull away from me?  

Know that if a friend or loved one with chronic illness withdraws, it may be their well-intentioned attempt to protect the relationship with you they find so precious. It may well speak to how highly they value your place in their life. 

 A tentative friend may be one who is longing to pour out her angst and discouragement to someone he or she loves (you) but when is enough, enough? Better to keep quiet than risk loss?

Breaking the Don’t Ask, Don’t Tell policy takes bravery. It takes a brave friend to take the time to authentically ask, and on the flip side, it takes a brave friend to truthfully tell. No matter which side of the fence you are on, it is a lot to take on in this hurried, surface-skimming world.

 Time and vulnerability: Neither are as highly valued as they should be. Food for thought.

Follow this journey on SoulTracings.

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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The Top 10 Things Every Person With Chronic Illness Understands

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As someone who is constantly sick, my life can be incredibly different from those who are healthy. Here are 10 things I’ve noticed since I became sick. I think you can probably relate!

1. Your social life is either nonexistent or mostly online.

I mean, most people socialize over the internet these days, but when you’re constantly sick and having to stay in bed, you might see your friends less and less and go online more and more. On the plus side, you probably have an awesome role-playing game character!

2. People sometimes suggest “cures.”

When people tell me about that chicken soup their aunt swears will cure anything, I believe they have the best intentions. But believe me when I say that if doctors can’t find a working cure, then I don’t think their aunt’s chicken soup is likely to help!

3. “Maybe you should exercise more…”

If I had a dollar for every time I heard this, chances are I would have enough money to support a scientific study to find a cure instead, of explaining that I try very hard to exercise but that just isn’t how my illness works.

4. When you want to study but you literally just can’t.

University is already hard enough on its own, but when you have a condition that causes you to physically lose focus and be in constant pain? You may begin to think maybe you are in the ninth circle of hell.

5. You do so much medical research that you think you should be a doctor.

With all those hours you stack up on sites like WebMD and your country’s Ministry of Health website, you could totally be spending that time becoming a real doctor… except you don’t have the energy… or the money.

6. Finding a job can be way harder.

Being an unqualified college student already makes finding a job hard enough, but when you can’t even stand for long periods of time or do heavy lifting? Welp, there’s no way I’m going to be able to do a traditional job so I might have to go look for odd jobs on Craigslist.

7. Unless you have something like crutches or a wheelchair, many people don’t believe you’re sick.

Whether or not someone believes you’re sick doesn’t affect how sick you are or aren’t, but it definitely doesn’t make things any easier — especially if friends think you’re making it up to get out of seeing them or your teachers think you’re making it up to get out of doing any work. We want to see you and do tons of homework, but our bodies may not let us!

8. When you hear that someone else is in pain, you instantly panic…

…but you’re also lowkey excited that someone else could have the same illness you have — but that’s also why you panic because you would never wish that upon anyone (except maybe that one ex who constantly made you feel guilty for having that illness).

9. Tattoos don’t hurt me that much.

I mean, I’m constantly in pain anyway, so how much worse can it get? Instead of the agonizing pain people describe for their first tattoos, to me it just feels more like I’m having leg hairs pulled out — no big deal!

10. You’re basically a superhero!

Well yeah, being sick and in pain all the time is quite a lousy superpower, but how many people can say that they power through even when their bodies are telling them they are dying? Not many — and you’re one of them!

What would you add to this list? Let us know in the comments!

Follow this journey on Under Porcelain Skies.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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12 Tips for Making College the Best Years of Life With Chronic Illness

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Being chronically ill is hard for anyone and being in college is hard for anyone, so imagine being chronically ill while in college. The best four years of your life can be the hardest, but here are some tips I’ve learned in my first two years in college.

1. Talk to your school’s disability office. 

They will be the ones to make your accommodations possible. I recommend having your doctor write a letter stating what your disability is and any other information you think may be necessary such as symptoms, treatments, etc. Talk about any accommodations you had in high school so your college is able to get a better understanding of what you need.

2. Find a pharmacy close to you.

The last thing you want is to run out of critical medicines when you are a few hours away from home. I found my closest pharmacy to easily access my prescriptions and let my doctors know which pharmacy it is.

3. Talk to all of your professors about your disability and give them your accommodation forms.

I always find it better to speak with my professors during the first week of classes so they can start to understand my needs. The longer I wait, the less helpful they tend to be. I feel the more information you give them, the better. You can even give them handouts about what your disability is so they can become familiar with it.

4. Keep the health center is informed.

You will likely have to complete paperwork before you begin college about any medical problems you have, medications, etc. After submitting the paperwork, if something new occurs, I suggest letting them know so they can put it in your file for future use. 

5. Always carry important cards.

I always carry my insurance card, ID and a medical card that gives my medical information and emergency contacts.

6. Keep in contact with your parents or caretakers.

They worried about you while you were home and they may worry even more when you are away at college and not under their care. My advice is to call them often.

7. Inform your friends and roommates about your health.

I have had to ask my roommate to take me to the hospital on a couple of occasions. We have been friends since kindergarten so she already knew about what I had. She even drove me all the way home in the middle of the week at 10 p.m. when I had appendicitis and I had to go to a doctor and hospital closer to home and doctors. Thanks roomie!

8. If you have a car, bring it.

Some schools do not allow freshman to have cars on campus. I was able to get special permission to have my car on campus during my freshman year so I could easily get home for medical appointments and get to physical therapy. They even gave me an accessible parking permit to use on campus so I could park close to my classes if I was having a really high flare that day.

9. Let the school know if a professor refuses to accommodate you.

I had to miss almost two weeks of classes when I had my appendectomy and when I came back, one professor refused to help me whatsoever. I was able to inform the school and they were then able to get me what I needed from the professor.

10. Keep in contact with your doctors.

They will be the best source of information when it comes to your health. They should be able to refill prescriptions or tell you what to do. Don’t just assume that since you’re now away at college, they won’t treat you unless you come home. They may be willing to work with the
situation.

11. Inform your professor as early as possible if you will need to miss a class.

Most professors will allow you to make up the quiz or exam. I suggest bringing back a doctor’s note. In the event of an emergency, such as an emergency room visit, contact them as soon as possible. When I had to go the emergency room a few times, I emailed my professors to let them know what was going on. In fact, last semester, I had to take my finals early so I could be admitted to the hospital for treatment and I had no problems because I let my professors know ahead of time and had my doctor write a note.

12. Have fun!

Don’t forget, these are supposed to be the best years of your life so I always try to have some fun. Whether it’s going to a football game or just watching movies with your friends in your apartment, I think you can make this experience how you want it to be.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Challenged Myself to Find the Positives in My Chronic Illnesses

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When you face challenges from any kind of illness, it can be easy to become trapped in a tunnel where you only see the negative in everything. Your once happy memories are temporarily replaced with moments where you’ve found yourself alone and crying or angry and mad at the world for not having the answers to your current problems. I wanted to try to get myself out of that thought process, and I think it’s important for anyone battling health issues to do the same.

While I have been in a glass-half-empty mode lately, I challenged myself to think of ways my autoimmune issues have had any sort of positive impact on me. It wasn’t easy. You can always think of a million ways about why something is wrong or negative, but why is it so hard to see it the other way? I think it’s because we’re too hard on ourselves. We feel we have somehow done the wrong things, taken the wrong steps and caused ourselves to be in our current state.

Image of beach for Jamie Jasinski’s post
Photo by Jamie Jasinski

My diagnoses keep changing, and in my current state, I have Sjogren’s disease, fibromyalgia, chronic fatigue and depression. Before I became sick, I was always an incredibly stressed person. I brought the stress on myself, since I was always wanted to be someone who never made mistakes and wanted to prove I could be successful with any task assigned to me. If something didn’t go exactly how it was supposed to, it basically turned my whole world upside down. I set expectations for myself, and if I didn’t achieve them in a certain amount of time that I had planned, I would worry and be so hard on myself.

Because of my illnesses, I have definitely seen a positive change in this part of my life. I unexpectedly became sick and could no longer work because my body wouldn’t allow me to. I have learned the more stress there is in my life, the worse my conditions will be. These factors have made me realize you can’t plan for everything. You have to take the good with the bad. You need to relax. Having a constant need to be on the go and never stopping to have time for yourself isn’t healthy. If you can’t do all that you set out to do, it’s OK. There’s always another day. You really begin to learn what matters and doesn’t matter in life when you are faced against big issues.

I’ve also been able to recognize a quality within myself I always knew was somewhere buried inside of me but had never shown itself so bravely before. During the times when I wanted to stop taking all of my medications and give up trying to fight my diseases because nothing was working for me, I managed to find this thing called strength within me. When I went through a rough time of not having insurance for a while and didn’t know how I was going to get through a few months without it, I found the strength to keep going and keep fighting. When my sad thoughts told me no one could relate to my problems, my strength helped me to find a way to shut that way of thinking off. Sometimes, you don’t know what amazing qualities you really have until you have grappled with the biggest challenges in your life.

Instead of thinking backwards, I try to set mini goals for myself in my current state now. It’s really important to accept your situation, no matter what it is, so you can move forward. While we all want to be cured and have no pain immediately, we must realize those things won’t happen overnight. A bunch of smaller accomplishments can ultimately add up into a big one. If you can find one medicine to take away a little bit of your pain, that’s a big deal! That’s one piece of the puzzle you’re on your way to solving. Getting sick has been able to give me the gift of how to think with ingenuity to say the least.

Probably the greatest thing I can say about how illness has changed me is that I love more greatly and with more appreciation. I see more beauty in life. Although my illness isn’t terminal, I’ve been struck by how quick being ill can take the abilities and things you took for granted away from you.

When I do get out to a store or to go to an event, I find myself taking mental images of things that make me happy and things I so often overlooked before. The colors of the trees changing, a moment with a child that made me smile, my boyfriend telling me I’m beautiful when all I see is a sick face. I have a yearning to be with those who mean a lot to me even more because I’ve realized they’ve helped me so much in this process. They keep me going; they make me happy.

I want everyone to challenge themselves to find the positive in your current situation. I promise you it will be hard, but it will be so rewarding to find there are things, even when you think they don’t exist.

Follow this journey on The Autoimmune Blues.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about 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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To Those Comparing Themselves to Healthy Friends After Their Chronic Illness Diagnosis

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There is one thing in common between becoming diagnosed with a chronic illness and losing a loved one: the seven stages of grief, known as shock, denial, bargaining, guilt, anger, depression and finally acceptance. These seven emotions are also often felt by people experiencing the day-to-day struggles of living with a chronic illness, as well as the recently diagnosed. But there is one stage not listed in this less-than-stellar lineup: comparison.

The rude awakening of a diagnosis, and feeling like your life was stolen from you after one life-changing doctor’s appointment may come with weeks and months of comparing yourself to others without this chronic illness.

Learning to accept the illness is only half of the battle. The other half is living with the physiological symptoms of them. They are both equally painful.

Having to stay behind while friends go out to eat or having to turn down a delicious cookie because it has too much chocolate in it, which would provoke a migraine, constantly reminds me that my life is not like my peers.

Over the past two years of struggling with chronic illness, I have experienced every one of the seven stages of grief. None of them are easier than others to handle and they get progressively harder each time a new emotion appears. However, by far comparison is the one that is the hardest for me to cope with each day. Comparing myself to friends who can run a 5K or get straight A’s and graduate cum laude is stress-inducing on its own, let alone trying to achieve these feats when living with a chronic illness.

Every day, my life has been scaled down to a microscopic level. Everything from making sure I go to bed before 10 p.m. and hoping I am strong enough to get from a prone to a supine position without syncope, or even little things like walking up three flights of steps to get to my classes on the third floor.

I think comparing yourself to your other healthy peers is disrespectful and degrading to yourself. Your first priority is becoming as healthy and strong as possible during the day, and the rest falls into place. Teacher yells at you for being late? Be happy you were able to come to school today! Friend gets annoyed for canceling plans? Remember that she hasn’t walked a mile in your shoes.

I hope if you take nothing else from this article, it is to be kind to yourself. It is not easy accepting and coping with a chronic illness, yet it becomes your lifestyle very quickly. Each time you start to compare yourself to others without chronic illnesses, whatever they may be, remember that the hand of cards you are dealt means that you are strong enough to handle them and, I believe, still succeed.

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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