Boy wearing backpack in classroom.

Back-to-school can bring many feelings for kids. Sadness, fear, joy, anger, stress, curiosity, confusion, tiredness, and for some unlucky kids, pain. Pain in their backs.

I know what you might be thinking, maybe even screaming at me via your screen. “What? Back pain? In kids? Isn’t that only for 90-year-olds and/or people who were weak to begin with? Surely you must be joking or mistaken, because children don’t get back problems!”

Sadly, back issues can be very real for some children, and probably are more common than most people realize. I should know. I am 18 and a half, and I have had chronic, constant back pain for 10 years. It started when I was 8, riding in the car, and the driver next to us decided he was more important than us. He ran the red light, while we followed the rules. The other guy rammed into us, totaling our car. Lucky for me and the parent driving, we had our seat belts on, and the car had locking ones (you know, the kind that might annoy you if you dropped something on the floor, but that you will thank if and when they keep you from kissing the steering wheel, dash, or the seat in front of you.) Also lucky for me, I was in the back. I didn’t have any life-threatening injuries, and neither did the parent, but we did get hurt, both emotionally and physically.

Since then, even more crap has happened to my back, including some things happening to kids’ backs all over our nation, and probably in other countries, too. Things that are either happening or about to happen. You might not even realize these things are affecting your kids or kids you know, just like you might not have realized children can get back pain. You might think your kids have time before the problems caused by these things develop, that these things don’t add up until someone gets old. You might think kids have a choice, and they could just choose not to do these things.

I’m referring to bad chairs, heavy backpacks, and lack of help for children with back issues. It doesn’t always take something as drastic as a car accident to cause back problems. Things that are common and seemingly benign can be harmful to the backs of children. Here is what needs to be done to protect our nation’s children from the agony that is chronic back pain, and to help kids who already have problems with their backs:

1.We need to get out of denial, and bust the myths about back problems. Yes, back pain can happen to children. No, she isn’t making things up when she says her back hurts. No, it isn’t “all in his head” when he is having trouble bending over. Yes, it can happen to your child. Yes, damage and physical stressors can add up, and it doesn’t always take a long time for them to do so. No, back pain is not just for those over a certain age. No, having back problems does not mean one is automatically weak.

2. We need to consider the possibility that a child may have a bad back. Sure, there are kids who are lazy, but there are also kids who have back problems and can’t do things, or they may be able to do things, but those things are hard. If an 8-and-a-half-year-old child you know drops something and then can’t pick it up because of a back spasm, the response to that child’s crying and complaining should not be, “You’re 9, not 90!” I would much rather have heard something along the lines of, “Are you OK? Here, let me rub your back, and then I will pick that up for you.” Or “Gee Meaghan, that must hurt! Mistakes happen, so I am not mad at you for dropping things. Since you can’t pick it up right now, we will work on picking up your stuff later, when you’re feeling better.” When you’re the one standing there, in pain and unable to move, having someone yelling at you is not helpful. Not to mention he got my age wrong.

3. Fund the schools! Schools are very underfunded, so they can’t always afford decent chairs. Chairs that provide back support and don’t force kids to awkwardly crumple themselves up are crucial to preventing back problems as well as treating existing issues. Underfunded schools also rely on students to buy supplies for the whole class, which means more weight dragging down each kid’s tiny back — as though the child’s own supplies weren’t already heavy enough! Underfunding is also linked to lack of support in many departments, including special education, which is a crucial department for the kids worst affected by back problems and can mean the difference between understanding and insensitivity toward kids with back problems in general.

4. About those school supplies… the American Academy of Orthopedic Surgeons says that the weight of a backpack should be 10-15 percent of the weight of a child. If your child weighs 50 pounds, their backpack should weigh 5 to 7 and a half pounds. Unfortunately, many kids are carrying backpacks that are far too heavy. Make sure your child is wearing their backpack using both straps, get the backpack fitted (if possible), and try to get one with a waist strap. This will help ease the burden on your child. Pick out a backpack made specially for children, because the material is not as heavy. Choose one with a lot of different pockets, so as to distribute all that stuff more evenly. If your child is grunting when putting on the backpack, coming home with red marks on their shoulders from their backpack straps,  suddenly slouching or stopping, leaning when carrying their backpack, or complaining about numbness, tingling, and / or pain in the back, neck, shoulders, arms and / or legs, their backpack might be too heavy.

5. And finally, no matter what time of year it is, don’t run red lights, unless you’re driving an emergency vehicle or escaping a super villain. Joking and references to “Big Hero 6” aside, if you’re not in emergency services, stop at the dang stoplight. You’re not that important, and you never know whose back you’ll hurt when you T-bone their car and shake their body like a rattle. There could be an 8-year-old kid in the backseat, just singing along to music, and you could hurt that kid if you don’t follow the rules.

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Thinkstock photo by Creatas.

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I’ve had low back pain since 2000, and the journey from treatment to treatment has been long and arduous. First, there was the physical therapist. Then there was the chiropractor. Then was the pain specialist center with another physical therapist and another chiropractor. Then several more after that. During that time were many steroid epidural shots, trials with acupuncture, acupressure, biofeedback and much more. The list of medications tried is endless.

Finally, after 10 years, in 2010, I was sent to a neurosurgeon with an MRI in hand. He determined that since physical therapy hadn’t solved the problem, surgery was necessary. I had seen this coming for a long time. I had heard from many people that I should never get the surgery, or that surgery is only a last resort. It had been 10 years. I was at my last resort.

 

In July 2010, I had a lumbar fusion surgery at the L5-S1 level of the spine – a very common location for a very common surgery. Although the surgery was scheduled for two hours, it ended up taking six. The doctor told me there were some minor complications but nothing to worry about.

I spent five grueling days in the hospital and then two months at home recovering from the surgery. In the hospital, and for that recovery period, I was given an opioid that has acetaminophen in it. I had never been given an opioid before the surgery.

I had a follow-up appointment with the surgeon two months after the surgery. The conversation went like this:

Me: “Why didn’t you put me on opioids before the surgery to see if that would work first?”

Doctor: “Opioids are for people with serious back problems.”

Me: “You cut me open and fused my spine. Isn’t that serious?”

Doctor: “You had surgery?”

Me: “Yes. You were the surgeon.”

Doctor: “Oh, we should have tried opioids.”

Now, I highly doubt I would be in a different place had they tried opioids before the surgery. I know pills are not the magic wand and neither was the surgery. In fact, it caused more problems, with my leg, with my bladder and with fibromyalgia. But it is the arrogance in which he spoke and the lack of care before the surgery. He didn’t even remember cutting me open.

One positive aspect of the surgery is that I am treated differently. Before, they used to talk in terms of: “If you still have pain, then you must need three more weeks of physical therapy,” which of course I had figured out was not going to solve the problem. Today, I am a person who “had back surgery,” which means, “it’s really serious.” They take me seriously enough to prescribe me opioids.

My surgery was in 2010, before the “War on Opioids” had begun. And the opioid epidemic has never been drastic in Chicago like it has in other parts of the country. Seven years later, I am still on an opioid, but a less dangerous one. I don’t consider myself addicted to it, although it is a tool in my toolbox to fight the constant pain. (Ice packs are the best, but they are difficult to carry around and use.) Perhaps my pain team was afraid to give me the opioid because concern about addiction is growing in certain health care and political circles. Only after the surgery was I considered part of the special club of “serious back pain,” and therefore worthy of the opioid medication.

Luckily I have a much better doctor now; however, pain levels remain the same. At least my current doctor is familiar with my situation, looking for new solutions and is honest with me about medication use. Most importantly, he doesn’t want to cut me open.

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Thinkstock photo via Milos Spasic.


Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication.

A year after having a lumbar fusion at the L5-S1 level of my spine, I began to urinate more frequently than usual. At first, my doctor explained it was from fibromyalgia. Like the 10 years of low back pain that led to the surgery, my symptoms of overactive bladder crept up on me. After a while, I realized there was a problem. When you’re not working and you’re not going anywhere socially, making 20 trips to the bathroom goes unnoticed. Without meaning to, I’d slipped into a state where obsessing over my health had been normalized. Because I was removed from everyday social interaction, I’d lost all sense of perspective, and the frequent trips didn’t seem unusual.

Friends and family encouraged me to revamp my social life, and as I did, friends told me I went to the bathroom more frequently than anybody they knew. At that point, I used a journal to track how often I was going, and then later, how much was coming out. I drank eight glasses of water a day, the generally accepted recommended daily amount.

 

The hard part was that even though I drank enough water, not much would come out during urination. I would have to squeeze to get a little bit to trickle out. Previously, I’d never paid attention to how much was being released. As long as I felt relieved, I was OK.

In public bathrooms, I took notice of the volume of other the men urinating and compared it to mine. They had solid streams while I had an anemic little dribble. These are the issues men may deal with in their 50s from prostate troubles – not men in their 30s.

I made an appointment with my primary care physician. Try this pill. Didn’t work. Try this other pill. Perhaps reaching back for a midwife’s potion from a bygone era, he asked me, “Are you drinking cranberry juice?” After a couple of months, he referred me to my first urologist. The urologist tried two more pills before giving me a cystoscopy. I had nightmares for weeks anticipating this procedure. A long, thin tube, with a camera in it, is inserted into the penis, through the urethra, past the prostate and into the bladder. This gives the doctor the ability to see the inside walls of the bladder.

The day of the procedure, the doctor and his female nurse asked me to get undressed and into a gown. While I was shaking in fear, the nurse calmed me down by talking about her sick cat who also had a urinary tract illness. She placed her hand on my shoulder while the doctor shoved that thing into my penis like he was sticking a straw into a McDonald’s paper cup. I can assure you that I was not lovin’ it.

The urologist determined my bladder walls were irritated, but he couldn’t tell why. This was enough information to tell him what to try next, which was – what else? – another pill. After that pill didn’t work, he sent me to his colleague in Des Plaines, a suburb of Chicago. As with the Illinois Back Institute in Wilmette, I had to do some finagling to use my partner’s car for that trip and follow-ups. Driving there was more painful than the cystoscopy.

This second urologist determined I needed Botox shots in the bladder. That’s the same Botox Madonna uses to pretend she is still singing in the “Like a Virgin” video. It is now used for many medical purposes to relax muscles.

Before the procedure, I had a routine appointment with my psychiatrist. I mentioned the bladder issues. He informed me that lithium, a pill he had me on, had a side effect of dry mouth, causing some people to drink excessive fluids. But I measured what went in and out every day. He ordered a test of my lithium levels. They were fine. Then he asked to speak with my urologist before the Botox procedure. I have no idea what they talked about, but now I would give a million bucks to hear what they said to each other. My psychiatrist brushed it off as no big deal when I asked him about it. Since my surgery didn’t pan out well, I’ve had this distrust of doctors, even “trusted” ones, especially when things go wrong.

During my prep for the Botox procedure, I asked the urologist standing over me, “Do you think this is related to my back problems?”

He replied, “A lot of people come to me with bladder issues after having that surgery.”

Considering his answer busied my mind as the Botox was injected. By now, I’d already had several long tubes stuck into my penis, so I was used to it. Once it was in, there were 12 shots to the bladder wall that were not painful. When it was all over, I was thinking about the cat of the nurse of my first urologist. I wonder if he has to use a catheter.

The biggest concern with Botox is that it might not work. Given that I’d had little relief from all the other pills, that would not be surprising, but I was willing to give it a try.

However, the Botox treatment backfired, causing a different problem. My bladder froze up and would not release anything. Then, the doctor had warned it would be up to a day before I could urinate. But after two days, I ended up back in his office because nothing came out, resulting in intense abdominal and groin pain. I had constipation of the penis. He gave me yet another pill that was supposed to help me urinate in the meantime. It didn’t.

After the doctor left the patient room, the nurse practitioner explained to me how to use a catheter, known in the industry as doing a “straight cath.” As she took it out of the package, she started laughing because, “I’m so used to explaining this to people in their 80s, not people in their 30s.” I laughed too because the likelihood of needing it was small. It was “just in case.” I didn’t know I would spend the next two years inserting catheters into my penis 20 times a day. Joke’s on me.

I shuddered at the idea of using a catheter myself. It’s one thing to have a medical expert insert it, it’s another to have to insert it into your own penis, and several times a day at that. But I needed it because my bladder would not release anything, whether there was urine in it or not. So I took the catheters home and started using them on a regular basis.

Over the next few days, I would call the doctor and hear it was “any day now” that my bladder would relax and I would no longer need to use a catheter. I would hear, “No longer than three days,” then, “No longer than three weeks.” Week after week became month after month. I still could not urinate on my own, no matter how many glasses of water I added.

I ran out of catheter samples. You can’t buy these in a store without a prescription, and there are only seven Walgreens in Illinois that sell them. None of them are near me or in downtown Chicago, which means another painful car ride. Not only did I struggle to get a prescription, when I finally found a pharmacy that had them in stock, the fax was never received by the pharmacy. During the finger pointing and assignment of blame, I still had to urinate. I took old catheters out of the garbage, washed them thoroughly with soap and hot water and reused them. Good God, that was a relief! The old saying, “When you gotta go, you gotta go” had never been truer. Of course, you are not supposed to do this, but I was desperate.

While waiting for the prescription for the catheters, the doctor suggested I go to the emergency room when I couldn’t urinate. But I had to urinate several times a day. Was I supposed to stick around in the emergency room all day? Since there was no cure for what I was going through other than waiting, this wasn’t considered a medical emergency. It was a health care industry failure. There was a product, a catheter, that could help, but I struggled to receive one due to insurance red tape, pharmacy snafus and lost faxes. The funny thing is that these things are just plain plastic tubes with holes in the end. They are not some engineering feat or major piece of medical equipment to do a complicated test. I’m sure you could get these from China for one cent each if a prescription wasn’t needed. Did they think I was going to abuse the catheters? Sell them on the street corner to teenagers who would bring them to parties? I must be way out of touch with what the kids are up to these days.

After a third trip out to Des Plaines for nothing other than sample catheters, the urologist hooked me up with a company that would mail me a month’s worth. Why would I need a month’s worth, huh, Doc? I was supposed to be cured soon. “Just in case.” And they were right. I depended on those catheters for 25 months and I still use them today. Every month I would call the company up for a new order. I had gone through this call-and-order procedure for medications before, but never just to urinate. They cost $66 a month, after insurance. It costs more to urinate than my electric bill. How many people have a line item in their budget for urination?

With any medical procedure, you sign a pile of authorizations. One of the forms listed possible side effects of Botox in the bladder. For six percent of patients, it will cause bladder retention. However, my doctor never mentioned that little detail. I would not have chosen Botox had I known my side effect would be losing the ability to urinate for over two years.

Upon losing patience with the second urologist, I found a third. He detected a tight bladder neck and said there was nothing else to do but wait for the Botox to release, which could have been up to four months. Friends and other doctors have criticized this move. People say I could have gotten better answers by staying with the doctor that did the original procedure. Again, as with the back pain, it always seems to be the fault of the chronic pain patient. But really, my biggest motivator to switch to a third urologist was the distance. I had only agreed to go to the second urologist in Des Plaines because I was referred to him for a single procedure. Since I don’t own a car, I’d had to borrow my partner’s and suffer from my back pain the whole way there. If “just wait” was the answer, I might as well wait nearby.

It took a while for me to figure out, but I could save money if I washed out the catheters like I did when it was an emergency and I had no other option. By washing a few out, I could skip every second month of catheter orders. My third urologist said it was OK for me to reuse them as long as I washed them thoroughly, again, with soap and hot water. I am not suggesting anybody else tries this at home. They are supposed to be one-use only catheters.

Lubricating jelly packets come together with the catheters in a package. I was reusing the catheters but running out of the jelly. You cannot order them separately, so I tried Astroglide. When the new shipments of catheters and jelly came in the mail, I stuck with the Astroglide because it is not as abrasive. In other words, it burns less when inserting the catheter. I regret not figuring this out earlier. The lubricating jelly packets are sterile, or bacteriostatic, unlike Astroglide, but the third urologist agreed with the substitution. Again, I do not suggest doing this on your own without talking to your doctor first.

Inserting a catheter is not child’s play. It takes patience and sanitation. They are 14 inches long and go into your penis, through your urethra, then the prostate, then finally the bladder. It burns the whole way through. The catheter needs to be clean or you might get a urinary tract infection. There’s an emotional side to this. It felt shameful as well as physically painful. There’s a sense of violation, even when I’m doing it to myself, by myself.

In public, the horror escalates exponentially. I still have to do grocery shopping. I still have to take buses across town to see other doctors. My friends and family still expect me to visit places with them, to get out of the house and stop brooding about my back and bladder problems.

Had I been urinating normally, rather than with the overactive bladder, perhaps I could have hidden my catheter use. However, urinating many times a day is something you can hide at home, but not in public. The process got harder. Those accompanying me knew of these frequent trips, but now the trips would be longer in duration. I’d say, “Don’t wait for me outside the bathroom. Bring a magazine.” Friends started calling my catheters “Cathy the Catheter,” my new BFF. As much as I hated her, the relief Cathy brought was intense. To this day I don’t travel anywhere without her.

Not all public bathrooms are made the same. Many have not been cleaned in this century. Sanitation is always necessary when using a catheter. That is why they are one-use. Think about the importance of washing your hands, a non-invasive exercise, after going to the bathroom. Now think how important cleanliness is when using catheters, which are inserted inside of you and can cause infections if not pristine.

I have learned to pay attention to different types of bathrooms. One-person bathrooms are the best. In those cases, I can wash the catheter in the sink and put it back into the plastic wrap for reuse. In a dirty bathroom, I have to use a new catheter in a package and throw it out. I only wash and reuse in clean bathrooms or at home.

Next best is a stall that is pretty close to the sink where I can hope and pray that nobody else is in there. Worst is the row of urinals, where no stalls are available. Here there’s no privacy and has resulted at times in making my bladder feel as if it was about to burst. More than once I’ve been “caught” using my catheter at a urinal. Imagine the reactions. Some people assumed it was some sort of auto-erotic sex act. “No, sir, this is not my way of coming on to you.”

In the beginning, when I needed the catheter, I stayed at home as much as I could. Now when I go out, I make sure I know where the bathrooms are first. There are even apps for that. Bathroom trips still overshadow my schedule. Sometimes I’ll get off a train, go to the bathroom at McDonald’s, then get back on another train to finish the trip.

Chicago has a big homeless problem. It’s very prevalent downtown and in my neighborhood. Because of this, many stores and restaurants lock their bathrooms and restrict codes and keys to customers only. I’ve had to buy numerous coffees I didn’t want just to use the bathroom. Frequent bathroom trips have turned me into a “bathroom celebrity” at certain coffee shops and restaurants. At one Dunkin’ Donuts, the morning shift guy always smiles when I walk in and says, “Hey, it’s the Bathroom Guy.” He no longer makes me buy a donut in order to use the bathroom. Besides, I have the door code memorized.

My partner, friends and family are supportive of me with this issue, although they question why it took so long for the bladder retention to release. “Try pushing. See what that does,” they would say. And of course I tried, but with no success. At first, I was very much “in the closet” about my catheter use, but after a while, it became too difficult to hide. Being honest with those closest to me about what I was going through was refreshing compared to keeping it a secret.

For the two family Christmas parties of 2013 and 2014, I had to talk to whoever was throwing the party that year to go over logistics. One year it was at my parents’ house, the other year at an aunt and uncle’s. Before the other guests arrived, I hid catheters in the bathrooms I would be using. There were extra catheters in my partner’s car, in my backpack and at my parents’ house.

Like chronic pain issues for my sitting disability, managing my bladder comes down to planning and asking for what I need. I still have much to learn. Two years after the Botox treatment, the bladder has calmed down and I am able to get urine out some of the time without the catheter. Yet, I still bring Cathy with me everywhere I go. I also use her before bed so I don’t have to get up in the middle of the night. Unfortunately, I still have the urge to go, even when there is no urine in my bladder. The urge comes, I use the catheter, and only two ounces come out. I feel a world of relief, but only for a half an hour. Like the sitting disability, I manage, not solve, this problem.

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For me, my chronic illness is back pain with the accompanying exhaustion and frequent depression. For you, it might be something else, but I would be surprised to find that we don’t dread the same kinds of question. I’m happy to answer the most common one that I get asked, which is the very sensible: “How is your back at the moment?” I have weeded out most of the others from amongst my nearest and dearest, but lapses occur and new friends have not yet been gently herded into the field of acceptable enquiries.

So the top 10 for me are as follows:

1. “Have you tried…?” It is a standing joke amongst my friends that I get asked “Have you tried Pilates?” all the time. I have nothing at all against Pilates and many of the physio exercises I do are also found whilst doing Pilates, but given that it is a famous treatment for back pain and I’ve been in pain for six years, yes I’ve tried it, thanks.

2. “Did I tell you that so-and-so has a bad back?” Yes, you have, probably more than once, and because swimming every week sorted it out for them, it won’t necessarily sort mine out. Backs are not all the same and thus please don’t suggest your solution is universal, as it implies that I am either lazy or stupid for not trying it.

3. “Can they do anything about it?” I had long metal rods put in it to correct the kyphosis four years ago, and usually a mention that I was prepared to go that far stops people from asking further. However, some do want more details. If you really want the blow-by-blow account of everything I’ve tried then I’m happy to give it, but don’t you dare look bored halfway through. It’s a long dull list, but you asked.

4. “Do you take painkillers for it?” Yes. I’m still in pain with them and insufficiently heroic to cope without them. And yes, I do worry about taking all that stuff into my body, so please don’t moan to me about having to remember antibiotics for a week.

5. “When do they think it will get better?” Obviously we all hope it’s going to get better, but no one has been able to promise anything on that score, especially where the rods were put in. More injections in my lower back might help but the last ones I had messed up other joints and I ended up in a worse state, so I am reluctant to try again. I too once thought that things were either curable or fatal, but it turns out that modern medicine still can’t do everything.

6. “Were you upset about stopping work?” This is a complicated one, as not working whilst in pain has obvious advantages over trying to carry on, and I am lucky that we can just about manage without my salary. The limited socializing that I can do would be impossible if I had to work the following day. However, I did enjoy my teaching job a great deal and my pride doesn’t enjoy having to be helped out by others financially, grateful though I am that they can.

7. “Would losing weight help?” Yes, I’m sure it would, and my failure to do so doesn’t mean that I’m secretly getting a kick out of being helpless, thanks. The pills mess up my metabolism, the pain makes many activities impossible, and a sugar boost is about the only thing that can keep me going until bedtime. So – whilst I admit a lack of willpower is also an issue – please don’t imply that this would be an easy way out of the constant pain.

8. “Does it hurt all the time?” Yes. Sometimes it flares up badly and sometimes it doesn’t, but it’s always there and very draining, and yes, that is pretty rubbish.

9. “Aren’t you grateful it isn’t worse?” Yes. Of course. It is possible to realize that other people are even more badly off and also be sick of your own crosses to bear simultaneously. I very much doubt you live in a state of constant gratitude yourself, in fact.

10. “Are you worried about the impact it has on your family?” Yes. There is
very little I can add to that, as the real answer to it is “Of course I am, but I’m trying to do my best for them!” followed by tears, but we’d all be happier if I didn’t do that in public.

So those are main things that I have been asked that I would hope not to be asked again. I would advise just asking how things are at the moment of anyone in a similar situation. If you feel the urge to ask anything further, you are probably best off with “And what would you like to drink?”

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I recently bumped into an old work colleague of mine. She is around 30 years my senior, and was close to retirement when we worked together around five years ago. We got along well. I wouldn’t go so far as to say we were friends, but we always worked together well. I got promoted, moved to a new team and only saw her around the office a few times after that.

It was only a year after I got promoted that I got pregnant and my health troubles started. She had heard “through the grapevine” what had happened to me. She had heard I had hurt my back. In reality, I had suffered a herniated disc during pregnancy, lived with a compressed sciatic nerve in excruciating pain for seven months until neurosurgeons could operate and was then left with nerve damage and a severely degraded disc resulting in constant sciatic nerve and back pain. This all happened nearly four years ago, so it had been quite a while since I had seen her.

 

When I saw her a few weeks ago, we were at a mutual friend’s birthday party. My husband and I were dressed up, and I had my pain management plan in place so I could manage the afternoon and hopefully have a nice time – I was even enjoying a rare glass of wine! She didn’t recognize me at first, and she was surprised to see I had a second baby since she’d last seen me. I asked if she was enjoying retirement and she said she was. She asked how I was doing after all my “back problems” and whether I had returned to work. I explained I had not been able to return to work, and had been medically retired. I did my usual routine of hiding how much this hurt to say out loud, how much it upset me that I had lost my promising career and part of my identity. I told her instead that I tried to look at the positives of the situation, the fact I could be home to raise my daughters – even if it was living a life of constant pain.

Then she made a comment that has been bothering me ever since. “Well, I guess it all worked out for the best.”

I’m sure those words were said innocently enough, but they stunned me into a stammering silence. I disagree. I don’t think “it all worked out for the best.” All worked out for the best would have been the surgery working and my life not being riddled with chronic pain, weakness, anxiety, depression and guilt. Worked out for the best is something you say to someone who got stood up on a blind date but instead met the love of their life, not someone who lost their career because they are living with a nerve and back injury that renders them unable to move some days.

It’s statements like these that make me feel unheard, judged and ridiculed by others. It’s the reason I experienced such bad social anxiety for so long, the prospect of encountering someone like this. How can someone say something so casually if they truly understood and comprehended what I had told them? Is it that they don’t believe my injury because they can’t see it? Because my injury isn’t visible externally doesn’t mean it doesn’t exist, or that I get an easy ride because I’ve been medically retired. Medical retirement has given me some sort of income – yes, that’s true – and I am thankful and lucky to have that, but it’s nothing compared to what I used to earn; and if I could change positions and be healthy and going to work again I would in a heartbeat. I don’t enjoy my status of invalidity retiree.

It’s not the first time someone has made such a thoughtless and dismissive comment, especially when it’s been at a special event, where I’m dressed up and appear well and enjoying myself. It seems that having fun is out of the question when you are unable to work because of your condition. I’ve had comments like “How come you can go out to a party if you can’t work?” or sarcastic beauties like “It looks like you were having fun today – I thought you were in constant pain?,” and even “Unless you told me, I wouldn’t even know there was anything wrong with you at all.”

These seemingly innocent, absent-minded comments made by acquaintances or strangers have certainly contributed to my anxiety and depression over the last few years. I know now these are cliched statements people roll out when they have heard what you’ve said, but haven’t really listened. I wish I could just shake it off, but I can’t. It’s easy enough to say, “Let it go, ignore it, don’t take it to heart,” but it’s so hard to do that. It makes me not want to talk to people other than my family and close friends because I know I have safety with those people.

Two years ago I would have stayed at home, thinking constantly about what she said, how callous her words were and how I would need to change the way I speak to people about my injury or avoid the subject all together. I’m strong enough now to channel my frustration and hurt into something productive. I realize now I should not have let my shock at her words stun me into silence. I should have spoken up and said, “No – I think you mean it’s the best of a bad situation.” And for the record, if you’re on the other end of a conversation like this, prove you are actually listening to the conversation and make an meaningful comment, like “I’m sorry to hear you’ve had such a bad run” and “It’s great to see you making the best out of your situation.”

A two-minute conversation can have surprisingly long-lasting effects on someone with a chronic condition, so avoid being that person by making the effort to listen properly and engage meaningfully.

Have you ever had someone make a comment like this to you? How do you respond? How do you manage to shake it off?

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Thinkstock photo via Design Pics.


Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication or starting new treatments.

I have a sitting disability caused by chronic pain in my lower back and left leg. It hurts when I sit, stand or lie in any one position for more than half an hour. For the past 17 years, I have been receiving, on and off: physical and occupational therapy, chiropractic therapy, massage, acupuncture and dry needling, acupressure, steroid injections, biofeedback and every pain medicine in the book. Seven years ago I even had back surgery, a lumbar fusion at the L5-S1 level of the spine. Nothing has worked and I have tried everything out there. Except for one.

 

For years, when going to my physiatrist’s (primary back pain doctor) office, I had seen a model for a Medtronic Spinal Cord Stimulator sitting on top of his desk. The doctor had kept reminding me that it was the last resort, only after shots and other medications were tried. Echoes of my previous physiatrist rang through my ears, as he used to tell me surgery was the last resort.

I knew it was coming. New physical therapists weren’t helping, the month-long treatment program at the Rehabilitation Institute of Chicago, one of the best in the country, hadn’t helped, and I couldn’t even feel the injections that were supposed to block pain. The doctor started handing me information about the spinal cord stimulator and gave me the number to the Medtronic rep in the Chicago area. He reminded me that he did not make a commission off of sales of this equipment, and I believe him to this day.

In short, a spinal cord stimulator is like a Transcutaneous Electrical Nerve Stimulation (TENS) unit inside of you that sends electrical currents to the spinal cord. It is operated via remote control, and has basic settings that need to be constantly adjusted. You start out with a seven-day trial period where the stimulator is outside of your body but still attached to the spinal cord through a break in the skin. If the test works, the unit is surgically implanted inside you.

This was not an easy decision to make, and I spent a lot of time researching this procedure. With the lumbar fusion, the decision was easy, simply because the doctor recommended it. With the spinal cord stimulator, there are risks and a high possibility of failure. Even my doctor suggested I research and think about it some more.

Nobody in my life had ever heard of a spinal cord stimulator, including a few nurses I know. There was very little about it on the internet that was not published by the manufacturers themselves. I joined a Facebook group for people with spinal cord stimulators or who were about to get them installed. I followed it for two years, reading the trials and tribulations of other people in similar predicaments as me. I tried to keep in mind that this was a group of people who had tried everything else but failed. I also tried to keep in mind that people who have had spinal cord stimulators successfully for a long time, with all the kinks worked out, would lose interest in talking about it in an online forum. As would the people who have had the trial and it didn’t work out. Still, I gathered a lot of information from those patients on the Facebook group that isn’t Google-able.

I am willing to put up with a painful surgery and difficult recovery for something that is going to work. However, oftentimes this surgery doesn’t work. Sometimes a patient will have a successful seven-day trial, but the results don’t last and another surgery is needed to remove the device. The battery needs to be surgically replaced every five years, with another recovery time, although improvements to batteries make them last longer. Sometimes the lead, the wire that runs from the machine to your spinal cord, can move out of place if you have a bad fall or accident. Another surgery. Some people have complained they cannot adjust the remote control by themselves without interaction with the company representative, or have ended up in the hospital because of incorrect settings. Some had described a buzzing feeling they cannot get rid of. One woman had said she felt a jolting sensation every time she went through the security at Walmart. These are the things I read in the online forum for patients with various brands of spinal cord stimulator implants.

The definition of success for spinal cord stimulator is a 50 percent reduction in pain. This isn’t a magic cure by anyone’s measurement. But for those of us who have chronic pain, a 50 percent pain reduction would be a miracle. However, because of my history of a failed back surgery and bipolar disorder, which can lead patients to perceive reduced pain during manic episodes, the surgeon said I would probably have even less reduction in pain. On top of that, I would have less than a 30 percent chance of it being successful in the long run. That is a small margin to justify cutting me open for a condition that is not life-threatening.

Then there was the talk about price. I know, I know, there is no price on your health. But there is. At this point, I had exhausted my savings; sold off my 401(k), my car and my home; and was not working, nor was I likely to be working anytime soon. The hospital with the only spinal cord stimulator surgeon in the Chicagoland area calculated that after Medicare pays their share, I would owe over $6000. The hospital did not do “charity care.” The Medtronic representative told me I would pay only $2000 due to a cap in Medicare. When I called Medicare, they disagreed with what the rep said about the cap on this procedure and gave me a higher price than both. It is always difficult to determine health care costs before something happens, and sometimes patients are left with sticker shock. Also, if the surgery didn’t work out and I needed it removed, it would be another $1200. Even after all of that, I still considered going further into medical debt for the surgery.

I received an evaluation with the surgeon, who sent me for an eight-hour psychological evaluation they put everybody through who gets the spinal cord stimulator. It measures spatial skills, short-term and long-term memory, color and word recognition skills and other tests. People who have this test need to be able to interact with the Medtronic representative for adjustments and know what they are getting themselves into, especially being comfortable with having a machine inside of them.

I passed the psychological test and was scheduled to have the surgery a week later. I was carefully weighing all the cons against the one pro: that I was desperate for pain relief and there was nothing else out there. After long and careful deliberation, I canceled the surgery three days before the scheduled date.

My cold feet came at a time when I was starting to learn how to recognize red flags in the health care industry. Like many other men in America, I was diagnosed with low testosterone levels. The doctor gave me a free sample of testosterone solution that looks like a deodorant stick. I noticed that my shelf of free sample medications was now larger than my shelf of prescribed medications. I receive a new phone call every week offering free home health care paid for by my insurance. And although he was nice, I felt like the Medtronic rep was too aggressive, doing everything he could to get me to have the surgery. These hard sell tactics were making me wonder if their interests lie with what benefited them, and not what was best for me. I was becoming wary because I’ve been screwed over too many times before with empty promises of back relief elixirs. All these things ultimately led to my decision to back out, pardon the pun.

I didn’t know at the time, but a couple of months before I was scheduled to have the surgery, Medtronic paid the US Department of Justice $2.8 million after it was accused of trying to sell the spinal cord stimulator to patients who would probably not benefit. Medtronic settled without admitting any wrongdoing. I am not equipped to make a determination on Medtronic’s ethics. As a patient, I am operating from a position of severe disadvantage. If it doesn’t come from my doctor or Google or WebMD, I have no way of knowing if Medtronic is legit or selling snake oil.

Just because I passed on the spinal cord stimulator doesn’t mean somebody else should make the same decision. In fact, I may change my mind in the future and get one. It is up to the patient and his or her doctor to decide, given their own situation and diagnosis.

There are new technologies and improvements for spinal cord stimulators coming out all the time. I do my best to keep up with them and so does my doctor. But at this time, it’s a no-go for me. I’ve stopped telling myself that this is the end of the line. I’m still searching for better ways to relieve my pain. That’s life for a chronic pain patient.

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Thinkstock photo via ChesiireCat.

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