Concept of accusation guilty person girl.

The Daily Struggle With Chronic Illness and ‘Chronic’ Guilt

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erin kissing her husband in a park
Erin and her husband.

It’s been three years now that I’ve been living with chronic pain and invisible illnesses. It’s taken me the entire three years to come to terms that my life will never be the same, and it’s something I still struggle with every day. What bothers me most, what is usually on my mind, is the guilt I feel.

We are a military family who recently moved from the South to the Pacific Northwest. We’ve lived here 10 months now, and we have not been able to see any local sights, visit Seattle for the day, or do any of the things I see my friends here doing, because of me. I’d love to spend the day in Seattle, playing tourist, but I know I can’t physically do it. I would use half my “spoons” just getting out of bed, getting dressed, and for the car ride. I see friends going on hikes in the beautiful scenery here, and I feel guilty I can’t say one Saturday morning to my husband and son, “Let’s go for a hike!”

Erin with her son at a baseball game
Erin with her son.

What makes me feel most guilty is what I feel I am missing out on with my family. My son plays high school baseball, and there are some away games I have to miss because I can’t drive or even ride in the car that long without knowing I will be in a lot of pain and also paying for it the next day. I feel guilty that my husband, who works 12+ hours most days, has to come home and cook supper, and do the dishes, and in general, clean the house. When he asks me if I want to go out to eat on a Friday night, I want to say yes so very badly, but by that time of the day, I’m lucky to have one spoon left to use, if I can even get off the couch. I can see the disappointment in his eyes, but being the man he is, doesn’t express it to me so as to not make me feel bad about not being able to go out.

I feel guilty when I have to cancel plans with friends. I’ve learned to try to not make plans, but as a volunteer, there are certain things I have to attend, and I enjoy it. There are meetings and functions I sometimes have to miss because of pain or exhaustion. I want to be there for all of my fellow military wives and their husbands at promotions, ceremonies, etc., but sometimes it’s just not possible.

Will I ever be able to rid myself of this guilt? I don’t know. I want to be a super mom and wife, a good friend, a volunteer my fellow military wives can count on, and to be proud of what I’m able to do, instead of what I’m not able to do. Before my chronic pain, one day I decided that having a positive outlook on life was much easier than being negative all the time, and it really did change my way of thinking. It made me happier in all facets of life.

Maybe now is my time to let go of the guilt.

No, not maybe.

It is the time to let it go.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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The Friendships I Never Expected to Lose Because of My Chronic Pain

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Chronic pain turned my life upside-down and inside-out. I had to give up my rock climbing, skydiving and whitewater rafting. I cried as I signed the paperwork to sell my motorcycle. Seeing anyone dancing is a stab in the heart of intense longing. Even keeping up with work became a challenge, whereas it was once a joy. Chronic pain stole my life — one I worked very hard to build. But you know what? These are predictable losses when you spend the majority of your time in bed trying not to scream, hoping you will just pass out and maybe, just maybe, get a break. Yep, it was predictable that many of my hobbies had to go. What I didn’t see coming was how many friends it would cost me.

When you are in severe pain, you might not be the most social person in the world. Pain brings you down to a pinpoint focus aimed at finding some relief — any relief. So when a friend calls to ask if I want to come hang out and have dinner, like we have for the last 10 years, I have no choice but to decline, even as I long for a margarita, some good Mexican food and hours of girl talk and laughter. Of course, I want to go. I want that little slice normality more than anything. However, drinks and laughter aren’t what they used to be. Instead, it means I have to watch my meds so I can drive and would be relegated to a virgin margarita. I would have to set a place at the table for my pain because it was coming, invited or not, and it’s a noisy and demanding companion. My pain would be so loud that I would have trouble hearing the girl talk, miss all the laughter and to top it all off,  after all that effort, I would pay for it later.

With all this in mind, when the calls, texts, or emails come in I become very selective about what invitation I accept, but it is not what you think. I haven’t ranked my friends in order of importance, though I have stopped maintaining acquaintances. My decision to stay or go has more to do with what the activity is, how long of a drive, how many people, do I have places I can rest, and if I get into trouble am I somewhere safe and with someone I trust. It’s a lot to calculate and fewer and fewer situations met my needs. So over time I accept fewer and fewer invitations, then, of course, the invitations stop coming in. It’s a sad thing to happen, but I understood. People get sick of hearing no.

I get it, I really do, but what I didn’t expect was for some of my friends to turn on me. Some people didn’t just stop calling; instead, they took the time out of their day to attack me. I was told how I changed and how awful I am now. I was told I was selfish. I was told I was so much less than the person I used to be. I was attacked in person, on the phone, and on the internet. I experienced cruelty like I never had in my life before, and this was all happening when I was already struggling to simply survive. It was a day-by-day process and when the attacks started I was caught completely off guard. I had been pretty much bedridden for almost a year and could not for the life of me figure when or where I could have possibly offended these people so terribly. Most of them I hadn’t seen at all in that time. Everyone knew I was sick, so they knew I wasn’t just being a jerk. Didn’t they? What did I do? And when on earth did I possibly have the chance to do it?

I was devastated. I was in physical pain all the time, but this was a whole other kind of pain. One on top of the other was agonizing. Everything hurt. The world seemed so wrong, not at all what I had previously believed it to be. It was a cruel and angry place. Even though I backed away from everyone that was angry with me, the attacks continued for some time after. I never did figure out what I had done to some of them. I’m not entirely sure they even know. Before all this I had a lot of faith in the basic goodness in people. This experience was traumatic enough to alter that. Completely.  Now I expect the worst so I can be pleasantly surprised instead of blindsided.

When I started to talk to other people who had a severe illness, they had very similar stories and it was quite clear they were just as hurt by it. I’m not sure what brings this behavior on. I guess it is another side effect of severe and chronic illness. My best guess is that some people have trouble facing mortality and being your friend is a little too real for them to handle. Maybe they don’t want to deal with your new limitations, so they kill the relationship. Why it has to be done so violently, I’ll never know.

So if you find yourself attacked by people you believed would support you, just know you’re not alone. This seems, unfortunately, par for the course. There are other people out in the world that will accept you as you are and be a real friend. You just have to find them.

Follow this journey on Then Everything Changed.

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? Check out our Submit a Story page for more about our submission guidelines.

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'What Does Love Feel Like, Mommy?'

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author's 4-year-old
Three days ago my daughter, who just recently turned 4, asked me one of the most difficult questions anyone has ever asked me: “Mommy, what does love feel like?”

We were driving home, and I was lost in thought and completely taken aback. I always try to answer her questions, even when I do not truly know the answers. But I can’t look in a book or browse the internet for questions/answers regarding love. I knew I had to respond and yet could only think of one word: safe.

It would be easier to answer such a huge yet simple question if Kayci was about 10 years older than she is, but she’s not your average toddler in any way, shape or form. I’m not sure I even understood the deepest feeling of love until she was born.

So I did what all adults do when they do not know how to answer a question: I answered a question with a question (don’t you just hate that?). I asked her, “How do you know you love Mommy?” She answered much more quickly than I had anticipated. “That is silly, Mommy. Of course I love you. You take care of me, are funny, and I don’t know I just love you.”

She kept pressing me for my answer. I finally surrendered and babbled: “Love is something that is hard to put into words. Mommy cannot imagine life without you. That thought is very scary because I love you so much. I think love is feeling safe and important and knowing you are loved enough to love yourself. I think you and Mommy love music so much because it puts into words what we cannot say.”

Fast forward to the next day when I was the lucky one to get the stomach virus going around. I awoke around midnight at the sound of my daughter’s voice calling me. I stood up and realized I was dizzy beyond belief. It was difficult to walk. However, my daughter needed me (love), and love sometimes means doing things you do not want to do. As I walked down the hallway I became more and more dizzy until I fell, literally, in front of our bathroom and then began vomiting everywhere. I was scared. I awoke the next morning with multiple bruises and unable to get out of bed.

My dad, who has always made me feel safe, was at our home within the hour, playing with Kayci and making me toast. I slept for the following 24 hours — that is sick. I never sleep during the day.

Our daughter has her first dance recital in less than a month, and yesterday was the last day to buy tickets for the show. I felt such guilt at the thought of not taking her to dance — or worse not buying tickets to her recital. Call it a mother’s strength, or call it love, but somehow I managed to get her dressed in her hot pink tutu, feed her and get her to dance class on time.

Her friend’s parents took one look at me and said,”What happened to you? You should be in bed. How did you  even drive here?”  Without thinking, I simply stated: “Love. I would do anything for my daughter.”

That is when I remembered the question, “What does love feel like?” There are so many different kinds of love: someone’s first love, love between two people who have been together for 50 years and as much as they get on one another nerves they cannot imagine a life without the other; there is the love between siblings, friends, and then the love a parent has for their child. Love has different feelings and can be amazing and filled with joy, and at times love can be scary and difficult.

We all have different ways we see and view love. I feel that love is feeling safe with another person. Chronic pain taught me who truly loved me and who did not.

If you love someone, you just know it; there is not a way to explain the feeling. As scary and difficult as love can be, it’s the most magical feeling in the world.

If you love someone who has chronic pain, they do not need you to fix them or even find the right cure or medication. They need your love. It really is that simple. The person with chronic pain or any invisible illness needs to know they are loved and safe. I will repeat the three most important words one can say to someone who has chronic pain: “I believe you.”

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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12 Things I Wish My Friends Understood About My Life With Chronic Pain

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Not being able to go to school, no parties, medications, hospital appointments — all these things are a part of my normal day living with chronic pain.

I can’t help it. It’s not my fault I have chronic pain, and a lot of the time what I need to get through the toughest days are my friends. Sometimes, though, my friends don’t understand that just because I’ve been going through this for two years now doesn’t mean it gets any easier!

Here are 12 things I wish my friends knew and understood about my life with chronic pain.

1. I’m still the same person I was before all this happened.

Yes, I may now use a wheelchair and crutches and spend a majority of my time in the hospital, but I’m still the same person who has been best friends with you since playschool! Please don’t treat me like a different person.

2. I can still text and talk on the phone.

I may not always be up for a long conversation, but most of the time I’d love to hear from you. Simply hearing the gossip from school would make my day!

3. It’s OK to ask how I’m doing.

I’d actually appreciate to know that you care. I may rant or cry about complications, doctors or hospital stays but just to have you listen to me and give me a hug when I need one means the world to me.

4. Invite me out places with you.

I may not always be able to accept, but if you give me a few days notice I can save up my energy. I understand it’s annoying when I cancel plans last-minute, but even just to come over for a cup of tea and watch a movie makes me feel less isolated.

5. I know I’m not a “normal teenager,” but I try my hardest.

I know that I spend more time in the hospital than at school, but when I do manage to get to school please don’t make a big deal of it. Just treat me like everyone else. All I want is to fit in and be like you.

So next time you’re getting ready for a disco, let me know. I may not be able to go out, but I’d even enjoy just to be there, helping you do each others’ hair and makeup and enjoying the company.

6. When I can’t go to school, I’m not at home being lazy.

Most people think on days I don’t go to school I’m at home relaxing, enjoying life or avoiding a math test. But the truth is, on these days I can’t get out of bed with the pain! I’m usually in bed crying, ringing my consultant for an emergency appointment or trying anything that might ease the pain. I would do anything to be well enough to go to school.

7. I still love football!

I’ve played Gaelic football since I was 5 years old and the fact that I may never play again breaks my heart, but it doesn’t mean that I’ve lost my love for the game! Do talk to me about the game that was on at the weekend — don’t think I never want to hear or see the game again. It’s been a huge part of life so far and always will be. Wether I’m playing on the field with you or being the team’s water girl, I’ll always love football!

8. I tell you everything — well, nearly everything…

I love talking to you and having someone to talk to when I’m scared or worried, but I don’t tell you everything because I don’t want to scare you. Like that time after surgery I stopped breathing properly, or how I needed to relearn how to control my bowel and bladder. I didn’t want to scare you and quite simply I was embarrassed! I hated being connected to wires and drips and having everyone do everything for me. I felt like a little child and couldn’t bring myself to tell you that everything wasn’t OK. So if I’m ever upset and you can’t figure out why, remember I may not be telling you every little detail.

9. I’m a professional at wearing fake smiles. 

I get up, get ready for school and put on my best fake smile. Like how you put on your jacket everyday, I put on my smile. It helps me stay positive and makes it easier and less awkward for you if I don’t look like I’m being stabbed in the back every few seconds. My smile is my favorite accessory.

10. The simplest things can be a major achievement for me.

I was asked to write an essay for school called “I skill I am proud to have developed.” I spent hours telling myself I have no skills and I’m barely able to walk, when really the skill I am proudest to have developed is walking! After not being able to walk for eight months, I learned to walk again with the help of my amazing team of physiotherapists, occupational therapists and doctors, and to say I am proud of myself is an understatement. But when I tell my friends and classmates this they look at me as if I’ve got two heads. They don’t realize this achievement is like climbing Mount Everest to me. This hurts me deeply as this is the third time in two years that I have had to relearn this skill. They don’t realize the amount of effort, energy and pain I’ve had to endure to be able to take a few steps. How frustrating it is when your physiotherapist has to physically lift your leg forward because your leg won’t step forward on its own. So when I finally manage to take a step on my own, please try and understand why I’m so happy and proud to be able to do this. 

11. There are good days and bad days.

This goes for most people but especially people who suffer with chronic pain. There sare days when I feel like I can do anything — go to school, go to music class, do some studying — what most people would classify as a “normal day.” Those days are great and I go to sleep every night praying, please let tomorrow be a good day! But there are also bad days, and those days can range from me feeling a bit sorer than usual to not being able to get out of bed. Sometimes if I do too much, than I can expect to have a “bad day” the next day, but other times they come out of nowhere. These days I try my hardest to keep going and I wear my fake smile, but it can be really exhausting. That’s why when I’m having a good day, I make the most of them. 

12. “How do you have this problem? You’re only 15.”

I have been asked this question millions of times in the last few years, not just from my friends but also from doctors and nurses. Yes, I do understand it is very rare for somebody to have needed two discectomies by their 15th birthday, but telling me that “Your granny has this problem” or for my doctor to tell me “This is what you’d expect to find in an 80-year-old” doesn’t make me feel any better! I realize my back is not normal for a teenager and that my grandad’s back is probably in better condition than mine, but I can’t help it. It may be rare, but it is very much real and I’m the one who has to live with an “80-year-old’s back” every day. 

I’ll forever be grateful for all the love and support my friends give me, don’t get me wrong, but I wish they would just understand that everything isn’t always as simple as is seems. My life is like a movie — a lot happens behind the scenes.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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On the Nights 'Painsomnia' Steals My Sleep

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This morning I sat at the kitchen table and cried.

Alone, while my dogs were napping after their breakfasts and my husband was in the shower getting ready for his day.

Those quiet, yet powerful sobs I’d mastered as a child growing up in a household where any show of emotion would be turned and twisted against me.

About a month ago, I wrote about how sleep was my only escape from the relentless pain. I’ve lost that, too. It’s been a couple weeks since the medicine I used to take to help me sleep through each pain-filled night stopped working. Now, no matter what I do, I wake up multiple times a night, in terrible pain, praying to fall asleep again. I usually do after an hour or two, but it never lasts until I’m again ripped awake.

Being in pain all the time was bad enough. Being sleep deprived and exhausted —which, lucky me, also only makes pain worse.

So sometimes I sit and cry, in pain, exhausted, and wishing for a few uninterrupted hours of sleep.

I can’t even nap anymore. I try. I end up lying there, awake, in pain, and frustrated.

I never had trouble sleeping before in my life.

And when I do sleep, I dream about my pain or things tangentially related to it: going to one doctor or another and getting bad news.

My edges are so frayed from pain and exhaustion, the little functioning I could manage before is all but stolen from me. Even making a telephone call seems like a monumental task. Writing can be impossible because my brain can’t seem to figure out what a word is more than a gesture and “thing,” let alone how to spell it. Yesterday I was trying to text a friend and I nearly gave up because the word “adjective” suddenly seemed like it was written in a foreign script as I could not figure out how to spell it even remotely close enough for the autocorrect to help.

And that makes me cry, too.

I’m known for being an extremely patient, understanding and nice person. But pain and lack of sleep has changed me. Even my mother remarked about how I’ve changed. I yell and snap at people and even my dogs with almost no prompting. I dropped the remote this weekend and lost it — I threw it into the couch and started yelling — all because I thought I’d finally broken it for good. And then, even after my husband determined it was not broken after all, I cried for a good 10 minutes, unable to stop.

I hate that this is what my life has become.

The one thing that helps carry me through even the worst days — besides my amazing and supportive husband — are the people I’ve met through social media who also suffer from chronic illness and pain. I text regularly with one friend in particular, one of the few people who truly “gets” what I’m going through. Even if we can’t do more than chat with each other and swap doctor horror stories, it’s still nice to have someone to “dump on” where I don’t need to explain myself, and she doesn’t need to explain herself to me, either.

We’re both waging the same war.

I know it’s a cliche, but when I say you’re not alone fighting your own invisible chronic illness, battling daily pain that has changed your life, you’re not.

It may feel that way too often, since chronic pain can be isolating. But we’re there. Quietly pinning away on Pinterest in the dead of night, logging hundreds of hours on Netflix, and blogging about our experiences when we can.

Every day I remind myself: It’s OK to cry. Just try not to give up.

Follow this journey on Chie Aleman.

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? Check out our Submit a Story page for more about our submission guidelines.

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What Feeling ‘Better’ Looks Like When You Have a Chronic Illness

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Something peculiar can happen when one is chronically unwell; the measure of comparison against normalcy just vanishes and is replaced by stages of unwellness and disease.

In practical terms that means some chronically ill folks like myself may have forgotten what being “well” feels like. How much does a person who is well feel on any given day? What’s the threshold for fatigue between well and unwell people? And at what point is pain pathological as opposed to the aches and pains everyone simply gets sometimes? When you add the fact that people sometimes adapt to the realities of life without even realizing this process is happening, we get a problematic scenario.

A few months ago, my doctor told me my health had deteriorated further. I couldn’t understand this at all. Sure I was exhausted, slept a lot and was in a lot of pain. But you see, my point of reference for the past 10 years has been exhaustion, pain and one health issue after another. Normalcy is no more. And when that happens, even deterioration is hard to detect for the person experiencing it.

So I went back to the basics. I talked to a friend of mine about activities healthy people can do on any given day. It turns out healthy folks are able to take a shower once a day if they so choose, can do more than one activity a day without collapsing, can function on seven to eight hours of sleep a day and generally don’t experience pain requiring more than a couple of over-the-counter pain relief pills to tackle.

I knew my daily life wasn’t the daily life of a healthy person, but what had eluded me was how far removed it had gotten away from “normal.” So I got a pen and paper and wrote down all the things I usually did in a normal day.

I sleep for 12-14 hours and still wake up feeling exhausted. I require high doses of medications to control pain, so I can put one foot in front of the other and get out of bed. I avoid supermarkets, shopping centers, drinks with friends, restaurants, coffee shops, parks and playgrounds because they involve walking, exhaustion and worsening symptoms. I have to dress like the weather is always tropical — even when it’s snowing — to control the swelling, redness, heat and pain of my limbs whose nerves are malfunctioning.

If that is the everyday reality of my health, then how do I even begin to gauge improvement or deterioration within it? This may sound ridiculous, but my personal measure is showers.

At my best, I have a shower in the morning and a bath before bed every single day. When I feel mildly unwell, that gets cut down to a quick shower every morning. Moderately unwell means a shower every two to three days. The stage of “I should be in hospital attached to drips” means a shower every seven to 10 days. If I allow myself to cross the 10-day mark without a shower, we’re at ICU level of disease activity. This gauge of disease mayhem against ordinary day to day activities is, of course, different for each of us and depends on the things we most enjoy doing on a good day.

So you see, my “better” may never be what the general population may think of as better. My experiences of life and normalcy will always be different. And that’s OK. “Better” may never mean cured or stabilized, but if it means getting to do a few more of the simple things one enjoys doing a bit more frequently, then that’s something we could all aim for and celebrate perhaps.

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 check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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