Close-up of a man taking pill.

I truly wish more people understood this about chronic illness:

We are not drug seekers.

We’re not after pain killers – we’re after a treatment that will reduce pain.

That’s a big difference.

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. It stops the attack or pain, but knocks you out or leaves you in a fog. Impairs your mental or cognitive function – memory, ability to concentrate, etc.

And guys, I’m 100 percent serious when I say sometimes these are only the mildly annoying side effects.

I’m not even counting the, “Oh my God, what is this doing to my body in the long run?” concerns. I’m also not counting the fact that they don’t always work 100 percent – or at all, there is no one magic treatment or doctor that will give us our lives back, or that many treatments are expensive or limited by insurance.

You’re probably thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time, and I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for. Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.

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Thinkstock Image By: Jupiterimages


It has been six years, two weeks and one day since my car accident. The flashbacks of the moments before the impact have faded, or maybe I just don’t think about it as much. When I do think about those moments they are as clear as day. The pain hasn’t faded though – it has gotten worse. I remember when I was told that the pain I was in wouldn’t go away, that in fact, as I age, my pain will get worse. I honestly didn’t believe the doctor. What I also know is that sometime in my future the pain might become so great I won’t be able to walk. That scares me.

damaged car after an accident

My accident felt like a very vivid dream I thought I would wake up from, though clearly I haven’t “woken up” from it.

So, since this is not a very bad dream, I have to learn to live with my everyday constant pain. Some days are better than others. Then there are the bad days. Honestly, I believe that with every bad day I make it through, the more likely I am to make it through the next. What do I mean by that? Well, chronic pain can be accompanied by depression, self-hate, exhaustion, anger and quite a bit of other things. Those bad days become worse when you work in retail and have to fake a smile. On those days, I just want to cry and crawl into a black hole and never come out. I am going to be very honest: on those days I think a lot about how much better it would be if I stopped feeling pain all together. But I don’t think it will ever come to that.

Chronic pain is not easy for the person who has it, nor is it easy for anyone who loves them. The only thing a loved one can do for someone struggling with chronic pain is to be there for them. Pick them up and remind them you love them. Hold them when they want to cry and listen to them when they are in pain. I know from my own experience that I feel like people think I am lying because they can’t see my pain and I hide it very well. No one can ever understand someone else’s pain, but that doesn’t mean you can’t be there for them. My chronic pain has and will worsen as time goes by, but I will never stop pushing myself to keep going. I know if I can motivate myself to keep going, you can too. Seek help when it gets too hard and never give up.

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“Who says you can’t go home?

There’s only one place they call you one of their own.”

— “Who Says You Can’t Go Home,” Bon Jovi and Jennifer Nettles

This song was my theme on a 43-hour drive across the country, moving back to my hometown. After 33 years out of state, with many intrastate and even overseas moves, I decided to go back to my little hometown.

Once 12 years of chronic lower back pain, two failed surgeries, and a bipolar disorder – not otherwise specified/mixed states diagnosis led to a painful divorce, I went home. I waited until my youngest graduated high school so as not to lose time with her. When it first hit me that moving back home was a possibility, it was an odd thought. To whom? To what? Why? As a failure with my tail between my legs? No way. As a survivor with my head held high? Maybe. But those things don’t matter when you go home. They know you. They love you. They don’t care if you are a smashing success or an abject failure. That’s what it means to go home.

So I mailed seven boxes, packed every inch of my sedan, and set out with my Golden Retriever in the passenger seat to my theme music. I was ambivalent about taking my dog. She had been with my ex, but with my youngest heading to college they were looking to give her away. Why not move home? I am not, by nature, more romantic than practical, so I spoke with my practical friends. One said, “You don’t want that! It’ll tie you down.” The other said, “It depends what kind of lifestyle you want.” I threw caution to the wind. Knowing that she would be a comfort and joy to my aging parents and a companion to me, I set off with her in the passenger seat for the drive of my life.

Because of my emotional and pain struggles, I had already left building a new career for driving limos. I hadn’t enjoyed a job that much in a long time. The responsibility was low, I enjoyed my colleagues, and I drove nice cars. I could manage my pain and emotions. I was able to locate a few limo companies back home and was willing to continue in that work. However, through my family I was able to locate a job fundraising for a local nonprofit that has been heaven. I’d done that work as part of my job, and had always thought a full-time position would be a fit. For me, the pressure is actually low — it fits my skill set and the atmosphere is low pressure. I don’t need to be 100 percent to do it well.

When I stress that I earn less than half of what I used to, I remember that I have health insurance and that finally, I am not in a job that takes 110 percent and wears me down. I work in the historical society/museum field. Our organization educates about the history and culture of where I grew up. So not only am I back home, I am “home-home” — engaged deeply in understanding my ancestral land.

I am now at my two-year anniversary of my move. I’d recommend to those struggling with emotional or pain issues who are considering it — you can go home. People you grew up with just know you — and you know them — in a way all your friends from afar can’t. My dog has been the brightest light in my parent’s life in a time of their decline. Just dropping her with them for the day does as much to help them as anything else I do. And though she isn’t convenient and limits my independence, she is a constant companion, keeps me going, and is the last piece of my family living under my roof. Rather than being a hindrance, she’s been great for my dating life — women find something endearing about a single man having a furry best friend. Go figure.

I had lived an almost fanatical religious life since adolescence and worked for and led religious organizations. I have ditched my religion after so much loss and hurt. My illnesses have made me a pragmatist. Health for me is being on my bike on a Sunday morning, with endorphins — endogenous morphine — pumping and easing my pain. I had begun to believe much more in coincidences than divine guidance. However, the factors that led to my finding a home back home sometimes were just too good, too serendipitous, to take as chance. Even though I can’t return to an all-knowing deity guiding my life, I leave an opening for something more out there. Perhaps returning home creates a kind of magic.

The pain is still persistent, disabling, and limiting. It augments my depression. I struggle to work full time so I use all my sick days and make accommodations where I can. I love my work. I needed my little nonprofit and I think they needed me. It was difficult finding new health care. After a few months the high of the move faded and reality set in. Buying and settling into a home took time, energy and money I barely had. But I’ve survived, even thrived, because I came to believe I could go home again.

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Thinkstock photo by Noel Hendrickson

What happens when you have worked so hard to get to where you are after an injury; surgery, or chronic illness, and you realize it isn’t enough? Or worse still, someone tells you it isn’t enough.

Those of us who have dealt with this for many years may avoid these situations at all cost, but for those new to it, you may still be going on trial and error. When you think you have built your strength up to an event or activity, and it works, it feels fantastic.

If you are not up to the activity, or worse still, you go ahead and do it and it leaves you feeling terrible afterward, the disappointment can be devastating. And on rare occasions, I realize as I’m doing something that it may be too much, but I choose to continue and pay for it later. It’s worth it to me at the time. These are usually life events like weddings, funerals or special events. Or it can be a gathering that is so much fun you can’t force yourself to leave.

Those of you with a chronic condition probably know all too well what I mean. However if you do not, or it’s a loved one with the condition, let me explain further.

When I got out of rehab after my surgery I was five weeks post op. I was feeling pretty strong. I had taken a lot of physiotherapy and was walking with a walker, able to dress myself and do most of my daily activities at the hospital. I still had someone with me most of the time, but I was so much better. One morning as my husband was showering, I noticed he had made coffee. I decided to pour myself a coffee. I lifted the half-full carafe off the burner and my whole arm started to shake with the pot in it. My low back burned, and as I quickly tried to replace the carafe, my legs just about went out from under me.

I was shocked. I sat in the closest chair and collapsed into my misery. I couldn’t even pour myself a coffee. Thankfully I didn’t spill it all over myself, but I might as well have for how miserable I felt.

I now realize the toll this has taken on my self-confidence. I was always that person who wasn’t afraid of anything, spontaneous and game for just about anything. Having a disability has taken some of that away. I can no longer leap before I think. I must think and pre-plan a lot in my life. So I feel a loss of the person I may have been. I see groups of woman gathering going to third world countries doing mission work, and know in my heart that would be me if I was healthy. For every group I want to join I have to consider so many things — the chairs, the timing, and if it is accessible and comfortable for me. Spontaneous Maureen has left the building.

I don’t want to sound as though I am not grateful for the level of ability I have. I am truly grateful I am able to walk and have healed well enough to resume my restricted mobility. Yet while I have worked hard and can walk daily, I am not a fast walker, nor am I a long distance walker. That is fine with me. Or it was, until it was pointed out to me by a friend of a friend. When my friend asked if I would like to join them for a walk, the other woman quickly made it clear it would be a power walk.

I felt like a kid in a school yard being bullied by the bigger, more capable kid. It was as though my disability was being held up to the light for all to see. It didn’t feel very good. She wanted her power walk for the day and didn’t want me to slow them down. So I declined and walked away. She was aware of my disability. I didn’t say anything to draw attention to my hurt feelings. People can choose to include me or not. It’s my reaction to it that needs to be examined.

The thing is, it stuck with me the whole day. It’s been about a week and every time I think of it, it makes me sad. I’m not sure why I let it get to me the way it has, but I feel sure she has not even given it a second thought.

The vulnerability I feel as a person with a disability is great. I often feel exposed and not good enough. There’s a great quote by John Powell, S.J. that goes something like this. “Why am I afraid to tell you who I am, because that’s all I have, and if you don’t like it I have nothing else to offer.” Those with disabilities do not have less to offer, just different offerings.

People with disabilities are oppressed all the time in different ways that may not look like oppression on the surface. When we can all look at each other and ourselves though a lens of kindness, the world will be a much better place.

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Thinkstock photo by Jacob Lund.

Tonight my pain is at an unbearable level. I’m choosing to write this to try occupy my mind, because what else can be done?

a woman's selfie of her frowning and leaning on her hand

I want to bring to light the feelings I am currently experiencing. Worry, fear, nervousness…all about this pain and how I’m going to take action against it. I would have usually taken Morphine by now but I’ve run out. I’ve run out of all my strong medication to try to combat these kinds of situations (not that they work). I have a pain diary, and I try to fill it in every day. I’m going to write here what I wrote in there and show you the main issue with my current situation.

May 7th–8th

My pain is very high today, and even worse now. My side pain is flaring, I feel sick and my back is in agony. I want to call a paramedic but I don’t want to waste their time. But I’ve run out of all my pain medication. I don’t want to be a burden on the hospital. They were here two weeks ago and now I need help again. I’ve almost overdosed on paracetamol in an attempt to make the pain stop. I’ve got burns from my hot water bottles. I need help but I don’t know what to do…

Now this is the problem. I’m in agony, the pain I’m currently experiencing I can hardly put into words, my right side feels like it’s in a vice, it’s difficult to breathe because it hurts and every single movement, the littlest shift in my body, causes the hottest, sharpest, deepest stabbing pain I’ve ever had the unfortunate pleasure to experience. I’m in pain; I should be able to easily contact a paramedic for help. That’s what they’re for – to help people who are in pain. But I can’t. I’m stuck on that fine line between “I won’t call them” and “I can’t call them.”

There are constantly posts on my Facebook about how we can improve the emergency rooms in the UK, and the amount of comments saying that they should turn people with chronic pain away or make them pay to use a bed…it hurts. It’s the deep, empty gut feeling that those comments are directed at you and me, even though we’re doing nothing wrong. We’re simply seeking help. If an animal was in this kind of pain and left untreated it would be considered animal cruelty. Why is it any different for a human? I shouldn’t have to sit here and wonder when my pain is “bad enough” to justify calling a paramedic. Well, now is too bad, yet here I am, unable to call because somehow I feel like this is my fault. That my flare-up is something I should be able to prevent.

We should be able to call for help when we need it and not worry about wasting people’s time. I hope there are people out there who are brave enough to call. Who say, “I need help.” So call for help. I hope they fight against the people who say we’re wasting time and taking up a hospital bed. I hope there are people out there who keep reminding hospitals and paramedics that our chronic pain is very real and needs efficient pain relief. I hope that can be me one day, but for now I will sit and struggle with pain until I can’t handle it anymore, until it feels like someone’s hammering railroad spikes into me, till I vomit and pee myself from the pain.

I need help. I shouldn’t be ashamed to ask for it – none of us should.

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My life began falling apart due to chronic pain around the age of 20. I had spent more than five years searching for a cure, having many surgeries, being on multitudes of medications and having my hope for a cure destroyed on a weekly basis and I was done. I could no longer juggle going to college, trying to receive good grades, spending three out of seven days of the week in doctors’ offices and trying to make and keep friends.

I dropped out of college and completely gave up on myself and my health.  I drove from New Jersey to Colorado where I had a couple friends who were kind enough to let me stay with them until I figured out what I was going to do with my life. Truth be told, I didn’t believe I had a chance at life and was just trying to get by and not think about pain. I hung out with people who enjoyed drinking and loved the college scene. My friends were drinking to be social and have fun during their years in college while I was drinking to numb chronic pain. I still had yet to be told I had chronic pain, as this was not a term used widely as it is now. All I knew is that I had a terrible bike accident that nearly killed me and I was left with pain that was invisible to everyone except myself.

I had never been prescribed pain medication and taking Advil had the same effectiveness on alleviating pain as eating Tic Tac’s all day would. So, I took drinking with friends to the next level. Being in a college town that was known for its partying made self-medicating my invisible illness quite easy. I fit in. We were always able to think of an excuse to drink: Taco Tuesdays, Wine Wednesdays, Thirsty  Thursdays, then the weekend was an obvious excuse to party: TGIF!

Most of my friends were in college full-time as I had been prior to dropping out and fleeing New Jersey. They had extra reasons to celebrate and drink with everyone: doing well on an exam, the end of mid-terms and the breaks we all know and love. I felt awful celebrating with them when I was doing nothing with my life. I loved school and had had so many dreams that I truly believed were stolen from me because of chronic pain. The more I hated myself, the more I drank and ate. Within six months I had gained a lot of weight. I ate all day and drank all night.

Having a hangover was easier than dealing with chronic pain. My friends understood hangovers but did not understand how in the world I had this pain when I looked perfectly healthy on the outside. Hangovers were amazing compared to dealing with my invisible illness. I started to get more and more depressed and hopeless. Drinking was no longer fun; it was a means to an end. I only drank to numb the physical pain I felt. My tolerance went up and I needed to drink more to get the same pain relief. Instead of laughing and having fun with my friends I always ended up sitting on our deck or on a mattress crying into the bottle of red wine I had grown to hate.

Each day and night seemed to get worse until one day I woke up very late in the morning and all I could smell was stale red wine. I looked beyond my mattress and saw red wine stains covering the carpet. I started to cry like I had never cried before. I knew I had hit my rock bottom and it was either drink myself to death or find a way to manage chronic pain that I had not found in the many years I had dealt with this invisible illness.

As I cried on that mattress surrounded by red wine stains my good friend researched places that specialized in chronic pain. He looked up every hospital and Pain Center in America and finally stumbled upon the Mayo Clinic in Rochester, Minnesota. Two days later, we were in my car driving from Boulder, Colorado to Rochester, Minnesota. A few weeks later my life changed forever as I entered the Pain Rehab Center at the Mayo Clinic where I spent a month learning how to manage pain naturally. The following year was tough as I spent that year solely focusing on my health and practicing everything I had learned at the Mayo Clinic. I never thought about numbing my pain with anything and the thought of red wine made me want to vomit. I have been using the tools I learned at the Mayo Clinic since I was 22 years old.

After my year of focusing on my health I entered college in Denver, Colorado and got my degree in Social Work. I loved learning about how to help people, especially people with an invisible illness. I am 35 now and it has not always been a smooth ride in my journey with chronic pain. There have been bumps, curves and some U-turns along the way, but nothing can compare to my days and nights of numbing my chronic pain with alcohol. My lifestyle is not conventional and I live a structured life that incorporates ways to manage pain with positive coping mechanisms. If I can find a way to live a life with chronic pain without the need to numb the pain, anyone can. One day you will believe me…maybe not today, but one day.

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Thinkstock photo via kieferpix.

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