The Unpredictability of Daily Life With Chronic Pain

The other day was a stunningly beautiful sunny day with a light breeze. Exactly what you imagine when you think of the perfect day to be outside doing, well, anything. I, however, sat looking out the window from my physical therapist’s office. My physical therapist noticed me looking and said, “What a beautiful day. Doesn’t it make you want to go for a walk? You know, that is something you can do and it’s very good for your overall health.” I produced my best fake smile and mumbled the appropriate agreement, but it really ruffled my feathers and I couldn’t figure out why. People make these comments all. the. time. Why was this one nagging at me? Turns out, this was a good question.

Who wouldn’t want to take a walk?

Healthy people may not understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t. Of course I would love to go for a walk on a beautiful day. For a healthy person who starts a walking regimen, they start with a short distance for a week or two and, then over time they can walk further and further. Their progress is basically linear, predictable.  

My body, however, is completely unpredictable. Maybe today I could go for a walk down the block. Maybe I could do it tomorrow and the next day, too, but the following day I might not be able to get out of bed at all. Did I do too much? Should I have only walked every other day? Would it have mattered? Suppose this flare lasts for three days and on the fourth I actually feel really good — should I brave a walk? Or am I asking for trouble? The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions. Given a total lack of knowledge about the consequences, how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives.

The greatest emotion that this inability to predict our own outcomes produces is fear. No one ever talks about the fear. If there was some ceremony where we were all sworn to secrecy on this matter, I clearly slept through it. When I’m faced with a beautiful day and I’m contemplating a walk, my head is calculating its very own spreadsheet of costs versus benefits. Will enjoying 15 minutes of walking in the sun mean I’m down for the next day? Three days? Five days? A week? How high is my pain now? Will this help or hinder? How high is my stress? Will this help or hinder? How is my mood? How is my fatigue? Will this help or hinder? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after? Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively. At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago.

While I may have made it clear that simple things can actually be quite complicated for those who suffer chronic illness and pain, I think we still have a bad rep for being flaky, cranky, unpredictable, angry, sad and many other things “with no good reason.” I don’t deny that my moods can be all over the board. It’s the last bit that is, well, absolutely wrong.  

To start, many of us do not sleep regular sleep cycles (or at all). Our bodies may already be confused about whether it is day or night, and our minds are not attuned to time of day or month or season. Pain can block other signals and cause brain fog. More importantly, many of us spend our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves. We are that prisoner not knowing if we go through with what we’re being asked, if we’ll get sunshine and rainbows or the rack (the torture device, not a clearance sale at Nordstrom). What kind of choices would you make if you knew going to see that movie may cost you a broken arm? Going to that party may mean a broken leg? That weekend getaway would probably mean a few slipped discs? Or maybe you will get away with it…this time.

Is it any wonder our moods can vary from one minute to the next? We are scared, exhausted, depressed, anxious, lost, disheartened, and so much more. We have no control. We know what we want and it is in sight, but completely out of reach. We are desperate to get better and many of us would gladly run marathons, backward, barefoot, naked, covered in whipped cream, carrying a monkey who was playing an organ grinder if that were the path to health, but it isn’t. For some of us, moving at all often means moving backwards.  

It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes your illness can’t possibly be that bad. Well, they are right. It’s much worse.

Follow this journey on Then Everything Changed.

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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3 Ways to Honor Moms With Chronic Pain

Teething, tantrums, sleep deprivation. Being a mom is hard work — for all moms. If you live every day with chronic illness, you know how it feels to balance the normal demands of motherhood on top of the worry, fear and misery that can accompany a life with daily pain.

I’m a mom who is always reading, learning and researching everything I can in order to provide the best life possible for my son. Unfortunately, what I’ve learned since becoming a mom is that women with pain and illness are often ignored in parenting literature. In light of Mother’s Day, my hope is that moms in pain are acknowledged and that we can bring awareness to the extra challenges they bear:

1. Remember that a mom living with illness has to face many worries every day.

These worries, of course, are in addition to the fears and concerns all moms have to manage. Is this medication compatible with nursing? Did I wait enough hours after taking it to breastfeed? Will I be judged for formula feeding if I’m unable to breastfeed due to my condition? If I have to stay up all night with my teething toddler, will the sleep deprivation cause a pain flare-up? How does seeing me in pain every day affect my child psychologically? Will today be a day full of pain, or will I be able to enjoy the day with my son/daughter? If I need surgery, will I be able to recover and care for my child at the same time? The list never ends. Just offering your understanding of the unique worries a mom in pain faces can help tremendously.

2. Give her some time to rest or enjoy a favorite hobby.

Parenting takes energy and when you have pain, energy is a finite commodity. Many people are now familiar with Christine Miserandino’s spoon theory, which she used as a metaphorical way to explain lupus to her friend. While healthy people don’t always have to consider how much energy each task of their day will use, people with illness have to be perpetually cognizant of the energy everyday tasks will steal from their day. If I take my baby for a walk in the stroller on this nice morning, will I still be able to function enough to make them dinner tonight? If I lift my toddler in and out of the car seat this afternoon, will I be writhing in pain by tonight? What will I do if my pain is so bad I can’t move later and there isn’t anyone else to help care for my son/daughter?

3. Don’t assume a mom is pain-free.

Moms will do what it takes to care for their children, often at any cost to their own health. Just because you know a mom who is doing a stellar job caring for her child (however young or old that child may be), that doesn’t necessarily mean she isn’t hurting. Let us not forget that moms in pain have good days and bad days, and that sometimes, for the sake of their children, they can be really, really good at pretending.

Follow this journey on Mothering With Chronic Pain.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? 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.

What I'd Like to Tell People Who Question My Mother's Chronic Pain

I manage a website called Pain Fog; it’s written by someone who has dealt with chronic pain for a long time, and doesn’t let it get the best of her.

This past year the health challenges kept piling on and on, and it seemed a little overwhelming. So she decided to do something positive and write about it. Every day she blogs about her challenges and successes while navigating through all aspects of neurosurgery #3.  She also shares the wisdom she has learned about living with chronic pain in hope of inspiring others.

Maureen and Jerri on a boat.
Jerri with her mom, Maureen.

This person is my mother.

This morning when I sat down to edit yesterday’s post, I was riveted; I stopped scanning carefully for mistakes and read it all the way through, captured. I was so moved by it. And I was so mad.

I shared her post on my Facebook page to try to spread her message, a powerful and important one that I believe needs to be repeated more often.

Not all disabilities are visible.

After I shared her post, I went on about my day, having my coffee and reading the news. But still I could feel that anger in my chest and in the pit of my stomach. I just couldn’t shake the feeling.

I wanted to gather up all of the people who have ever questioned anyone with a disability, whether it be silently or vocally, and ask them what gives you the right to judge? I want them to see my mother’s whole life story, everything she has been through, and then dare them to look at her with the same judgmental eyes.

But of course I can’t.

So I sat down to write this instead. Unless you have experienced a disability firsthand, or live with someone who does, it is very difficult to understand. I bet lots of people would read this post or her post and roll their eyes a little bit and think, that doesn’t happen, does it?

But it does. More often than you want to know.

To the TSA agent at Pearson Airport who made every head turn when he loudly said that you can only use the disabled lane if you have a real disability while staring at my mother, who after a long day of travel had trouble standing on her own two feet:

Not all disabilities are visible.

I bet you have no idea how hard it is to navigate that airport with a disability.

To the man who muttered under his breath and rolled his eyes at the grocery store last week when we parked in the disabled parking:

Not all disabilities are visible.

A smile would have gone a long way on a hard morning.

To the lady who seemed quite annoyed that she had to move her purse so my mother could sit down at the hospital after just being told she needed another complicated neurosurgery:

Not all disabilities are visible.

Your purse doesn’t have feelings; people do.

To the flight attendant who said pre-boarding was for those with special needs only, why don’t we get in line with everyone else:

Not all disabilities are visible.

Your sarcastic tone is demeaning.

To the server at a local restaurant who helped us rearrange the chairs so my mother would be more comfortable, without asking questions:

Not all disabilities are visible.

Thank you, we had such a fun night.

To the child who offered her seat in a packed airport to my mother:

Not all disabilities are visible.

Thank you for making a long hard travel day much easier.

To our neighbors who shovel the driveway when my father and I are away:

Not all disabilities are visible.

Thank you; you help more than you know.

To anyone who has ever offered help to someone who looks like they need it, or doesn’t look like they need it:

Not all disabilities are visible.

You put a smile on someone’s face for the rest of the day.

Often if we see someone else’s struggles, it is just the tip of the iceberg. Everybody has demons in their life. Some you can see; most you can’t. It hurts me to see my mother have to deal with so much judgment from people who have no idea what she has faced.

Asking for help is difficult to do, and it comes in all different forms: asking someone to move their bag, using the disability parking or accessibility services in an airport.

To the older “gentleman” who gives my mother a snotty look when she parks in the disability parking and places her permit in the window:

Not all disabilities are visible.

When you question people who are asking for help, it’s like kicking them when they are down.

The choice we face every day to be kind or to judge happens in a fraction of a second, but it has a lasting impact. So next time you are faced with a decision to judge or to accept, I hope you remember: not all disabilities are visible.

Follow this journey on Pain Fog.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

To the Husbands and Wives Who Feel 'Less Than' Since Becoming Chronically Ill

So what exactly does “for worse” mean? You know, in that famous phrase “For better or worse” that many of us get to say? Many of us go through difficult times in our marriage, but we don’t always feel like the rough times are actually the “worse.” If I were to ask you what “or worse” meant, many of you would say things like cancer, death, bankruptcy and other life-changing events. But what if “or worse” creeps up on you? Would you recognize it? And, what if it’s only “or worse” for one of you? Is that even possible?

When I first started dating my husband in December of 2009, he had more energy than anyone I’d ever met. He was always on the move — calling someone to plan the next event, going on a vacation, working, going to dinner, going to the lake, coaching little league. I mean, the man was never still. His idea of relaxing was hanging out with a bunch of friends at a cookout, anywhere — the lake, your house, his house, the park — wherever. This man showed me what it was like to make it a priority to actively pursue happiness in the little nuances of life.  

In 2012, he suffered a back injury at work. It turned out to be significant. He was physically incapable of doing nearly everything other than walking, sitting and sleeping. It was finally determined that he would need surgery, and looked forward to it, hoping to get back to his life. But since then, he has experienced the highs and lows that come with major injuries — a period of small improvements, giving him a glimpse of healing, followed by a gradual decline to feeling worse than before the surgery. About a year later he underwent another, more extensive surgery to repair what the first surgery didn’t correct. This time they put rods and screws in his back. I had never seen a person in as much pain as he was in immediately following that surgery.  

I don’t live in chronic pain, so I can’t even begin to understand it. But I do know that some days, hours and minutes are worse than others for him. Some days he’ll feel like driving to the lake so the boys can fish — some days he doesn’t. Some days he feels like going to work — some days he doesn’t. One of the biggest problems with his pain (besides the pain, of course) is that it’s completely unpredictable.  We don’t go out of town for long weekends anymore because of his very real fear of being in pain the entire time, even if he feels “fine” the day we would leave. In fact, we plan very little. If he’s feeling OK, and we can get a plan for the kids within 30 minutes, we’ll go to dinner and/or the movies. I cherish these moments, because they offer me a glimpse of our not-so-distant past together, and hope (even if it’s inflated) of what our future could be like. But the next day, he’ll be in so much pain that he spends hours on the couch, because it hurts to breathe. And it’s then that I’m reminded that his pain is probably going to get “worse.”

I have experienced my husband’s confidence level going from the verge of “cocky” when I met him to almost non-existent today. He apologizes constantly for not feeling like participating in life. He feels like he has nothing to contribute. Before the injury, he did the cooking and cleaning (including the laundry!). Now, he apologizes when he sees me folding clothes. Yet, he still does these things on the days he feels “OK.” And I would even say he probably still does more housework than the average man. I’m extremely grateful for that.  

I’m not the least bit disappointed in him. In fact, I’m constantly inspired by his ability to put on a smile that masks the pain that I know never really goes away. I once heard him tell the doctor that on a scale one to 10, with 10 being the worst pain he’s ever experienced, his pain level on a “good day” is a five to six. What?! Who can function like that?  

So now our weekends are generally spent at home. I miss doing the things we used to do. I miss hanging out with our friends, going to the lake, taking road trips with (and without) the kids. But, I also love my husband. Unconditionally. Without fail. 

My point is this — “for worse” wasn’t the back injury. It wasn’t even the two surgeries that followed. “For worse” for my husband has been the change to his attitude. Although he is no less of a man to me or our children, I think he feels like he’s less than he once was. He is either in too much pain to participate, or, if he does feel like participating, he is constant fearful of the pain bearing down on him in the midst of an activity. He wants so badly to be an “active” participant in our lives and our kids’ lives. So when he can’t, he apologizes. Repeatedly. He wants constant reassurance that we all still love him as much as we did “before.” And unfortunately, I don’t know that there’s anything any of us can do or say to convince him he is still the amazing husband, father, provider, and Christian that he was “before” — he’s just different.  

man kissing woman on black background
Lori and her husband (photo by Travis Evans).

Red is different from blue. It doesn’t mean red is better than blue, or vice versa — it just means they’re different. The pain has made him live his life differently, and I think he interprets “differently” as worse. His health is worse, yes. But he, at his core, is not worse. He is different. Our marriage is not worse. It’s different. His parenting is not worse. It’s different. He was red and now he’s blue. So what’s “or worse” for me? It’s trying to convince him that this isn’t “or worse” for us. This is just different.

To my husband and others dealing with a chronic health condition, don’t let the world convince you that your physical limitations make you “less than.” All they do are determine the path you take to your awesomeness. I think my husband is the same smart (genius, actually), loving, handsome, sexy, strong, passionate, amazing man he was before his injury — he just now has to find different avenues to live his life. My job is to help him pave the new path to achieve his awesomeness — our path, which we will pave together, to our goals. And this is our “for better.”

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.

Why I Was Wrong to Think My Mom Hadn't Taught Me How to Live With Chronic Pain

My mom and I have always had a close relationship. Growing up, I loved spending time with her. Whether we were baking, reading, completing chores, or going on walks, I loved doing it all right beside my mom. Envisioning a future where I grew up and modeled myself after my mom filled me with excitement about my future. 

As a child, I wanted to do everything just like my mom did. I wanted to live life with the same joy and care that she exemplified. Her kindness and concern towards other people were traits that I wished I could embody as well as she did. The intelligence and wisdom she displayed about practical matters and about personal matters alike made me follow her lead in a lot of areas of my young life. 

There were many lessons I learned from my mom as a child about how to live my best life possible. However, these lessons seemed to run dry when I suddenly developed chronic pain as a result of numerous life-changing illnesses when I was a preteen. Suddenly, I was flung into a situation that no one around me had ever encountered before. I felt as if I had no one to look up to who could teach me how to handle chronic pain. While I knew that my mom’s life and the rest of my family’s life had changed as a result of my pain, the change seemed very far away and different from how my life had changed. 

The life lessons I had learned from my mom seemed to no longer apply to my life. I was suddenly forced to walk on unfamiliar terrain, and the lessons I had learned from my mom in the past, along with the ones I was still trying in vain to learn, gave me no leverage against my chronic pain. I sadly believed throughout my teenage years that the lessons I could learn about how to live with chronic pain would have to be found elsewhere.

I am now nearing the end of my teenage years, and I have come to the conclusion that I was vastly wrong. I did not need to look far or search hard to find someone who could show me how to live with chronic pain or inspire me to do so. My mom had been showing me how to live with chronic pain all along by teaching me the most important lesson I have learned on how to thrive with chronic pain. She taught me how to have grit in the face of life’s challenges. I just did not realize it until I matured enough to understand what my mom was trying to teach me.

“Grit” is defined by Merriam-Webster as “mental toughness and courage.” My mom showed me how to be resilient and tough when she took me to doctor after doctor when I was searching for a diagnoses, despite repeatedly failing to find an answer and having to deal with rude and uncaring doctors. She showed me how to develop hardiness when the demands of caring for me were piled on top of her responsibilities as a wife, mother and teacher. Her toughness of mind was modeled when she believed through adversity that it is possible to retain the essence of your true self. Through her stubborn refusal to allow me to give up on myself, she showed me that having courage does not mean it is not OK to stumble or be afraid. It means having the strength and will to keep trying when you are surrounded by hardships and fear. 

mom and daughter with mountain and trees in the background
Delaney and her mom.

Living with chronic pain requires the sufferer to become mentally tough. It requires a large amount of strength to get out of bed, push through the pain, and stay psychologically, emotionally and mentally strong. I am thankful that my mom was modeling how important grit is in the face of pain for me before I even realized that she exemplified the trait. Through my mom, I learned how badly I needed to develop it as well. I also learned what it took to possess grit.   

Now, when I struggle to keep pushing through pain, and I find that the pain is interfering with the goals I want to reach, I think about how my mom has never let the struggles she has faced because of life’s challenges get in the way of what she truly wants. I have learned that I never lost the ability to learn the life lessons I need to learn from my mom, especially when it comes to my chronic pain.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability 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. 

Why I Believe Dating With a Disability Is Worth the Awkward Moments

Dating can be challenging and complicated. Add fitting dating between doctors’ appointments and it can seem impossible. Scope, an organization out of the U.K., has found that only 5 percent of non-disabled people have gone out with someone with a disability. This may seem frustrating, but I’m here to say let’s firmly demolish that statistic. I’d like to think I’ve made a solid dent.

Back when I was a young dater, I thought dating medical students would be a brilliant idea. I don’t know if it was a moth to a flame effect, as I’d never send them messages first, but I went on dates with at least five medical students within a year. I naively thought I understood their world, having grown up chronically ill, and they would therefore understand me. This was wrong. One actually broke up with me in the hospital because he was embarrassed I was at his place of work getting a blood transfusion. Another told me no one would ever want me except him because I was damaged. This is not a medical student thing. I have lovely friends who are doctors. This was the result of me dating with low self-esteem.

Here’s the thing. If you are ready to get into the dating game, you have to go in knowing that some people will be OK with your disability, and others won’t be. It will be great if the jerks make themselves readily apparent from the get-go so your time isn’t wasted. We will all encounter our bodies failing at some point, and their life will suck tremendously when they are incapable of dealing with their own life challenges.

You have no one to keep up with. It may seem like we are all supposed to reach milestones, but everyone’s life really varies if you take the time to look beyond the surface of what’s being posted on social media. Know that you are not “lucky” to have someone dating you. Why not you? You are awesome. You are a badass. Why? Because of all the great attributes I imagine you have. Why? Because of your fantastic taste in music, movies or your general ability to make people smile. The right person will never make you feel like they are doing you a favor by spending time with you.

It’s up to you if you want to put your disability in your dating profile. If you are in a wheelchair, it’s probably not a bad idea to make the chair visible in a photo. That way, your date will know who they are looking for. Again, disclosure is completely your call with a visible or invisible disability. At one point, I just listed that I had migraines in my online profile. Migraines are my “gateway health issue” — it’s the mildest (although often most annoying) of my health issues, and it allows me to feel out someone else’s vibe in regards to someone being ill. I received a plethora of “you are so brave” and “you’re inspiring” messages. Because of migraines? Unless these messages come with some other interesting questions about your life, you are being reduced to just having a health issue or disability. Keep that in mind when deciding whether these are the people you want to date.

Don’t ruin your own dating life because of your fears. Tell the other person about your disability when you feel comfortable enough. When did you tell your friends? That might be a good gauge. I always over-analyze sending messages to people I’m dating, and I had a friend say to me, “Would you be questioning whether or not to send me that text, or would it have already been sent?” They were right.

Sometimes people who have spent their lives managing their own health issues can get a little defensive when someone else comes along and wants to help – “I can do this myself!” “I’m independent!” “I don’t need to be taken care of.” Remember, there is a difference between allowing yourself to be cared about and becoming helpless. I had an excruciating migraine a few weeks into dating someone. I don’t know how he sensed it because most people can’t, but he knew I wasn’t OK. I couldn’t even lie and pretend I was OK because we have this whole thing about being completely honest. My parents had to retrieve me from his house to take me to the hospital, although he did offer to take me. I was in so much pain that I started sobbing. I immediately went to retrieve my sunglasses so he couldn’t see me crying. It was all too much realness. However, after his request I took the sunglasses off and allowed myself to be taken care of. It was hard.

I firmly believe that eventually you will find someone, and you will be so surprised that having a disability in no way bothers them. You may never fully understand this, because it’s still not entirely easy for me to grasp, but to the people who care about you, having a disability is just a part of you and not all of you. Believe them when they say it doesn’t bother them. Don’t push them away when you get scared they’ll leave when they know too much. Put yourself out there, even if you are unsure of what the results will be. I can’t live my life waiting for the other shoe to drop. I can’t live happily while waiting for disaster. Not every date will be great, but have fun and know you too are worth the incredibly awkward dating experience that everyone else without disabilities or chronic illnesses is having.

There are wonderful people who will hang out in a hospital room while you are recovering. To them it won’t be a big deal. I was lucky to find one of them. There’s one out there for you, too.

Sami and her boyfriend, beside her in the hospital.
Sami and her boyfriend, beside her in the hospital.

A version of this story was originally published on The Good Men Project.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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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