Chronic_Pain

What It’s Really Like to Live With Chronic Pain

For these three men, their challenges aren’t just physical. Chronic pain is a mental health issue, too.

The defender crashed into me from behind as I went up for the header. I fell, hard, on my back. The soccer match was heated, and I was more pissed to be taken out of the game than I was at the potential damage to my spine. After all, I was only 20. I figured the residual back pain would go away.

It didn’t. It took me about six months to finally get an MRI. It revealed I’d not only herniated three discs, but two were bulging. Initial physical therapy and epidurals proved useless. Months of treatment turned into two years. I numbed myself with alcohol and painkillers; otherwise, every waking moment was pain.

An option on the table was spinal fusion, which I was convinced still wouldn’t help. I didn’t want to admit I needed one before I could legally drink. I was supposed to be young and spry, but I was crying into a bowl of Cheerios, unable to handle the prospect of a lifetime of searing, inescapable, life-altering pain. To me, that life wasn’t worth living.

On a whim, I went to a local Illinois chiropractor who was offering a newish non-surgical procedure for herniated discs called “spinal decompression.” Basically, it pulls you apart and allows the discs to “slip” back into place. It worked for me. After about a year of spinal decompression sessions three times a week, I was about 90 percent pain free — and still am, a decade later.

But, of course, my back still sucks. Every four months or so, I throw it out. But it’s nowhere near the levels of pain it gave me before. It was pain I still cannot imagine living with. It affected every single thing in my life, every waking thought and movement.

Chronic pain isn’t just physically debilitating — it’ll weigh on your mental health, too. According to Dr. Kathleen Smith on Psychom.net, it’s an “emotional [condition] as well that has tremendous influence over a person’s thoughts and moods.” According to research, she notes, 30 to 50 percent of people who suffer from chronic pain struggle with depression or anxiety.

So I reached out to men with similar stories to hear how they get through it. While I got lucky and recovered, they’re struggling to find a solution, soldiering through pain on a daily basis at the expense of their family and career, unsure what life has in store for them.

Josh, 43, Australia

I have had migraines since I was a young child. They became chronic in adulthood. I average around 15 migraine days per month. For most of this time, I have been able to rely on taking prescription medications when a migraine occurs, which often helped. This allowed me to work full-time for most of my life. In the last couple of years, my reaction to these drugs has inexplicably changed; I can no longer tolerate taking them.

This means that when I have a migraine attack, there is nothing I can do about it, so I am no longer working. I am currently on extended sick leave. I have been a high school teacher for the last 14 years, but I can’t see any prospect of a return to work.

I have tried every preventative medication there is, with no effect. The immediate cause of the migraines is not known, but they are hereditary.

I feel like it defines me as a person. The first thing I think about when I wake up is whether I can feel any head pain. Throughout the day, I am constantly monitoring how my head feels to see if the beginnings of a migraine may be creeping in. I get paranoid about every slight sensation in my head: a little pop of pain, the slightest pressure. Things that most people wouldn’t even notice make me stop and think, Am I getting a migraine? Is the rest of my day about to be ruined? Should I cancel whatever plans I’ve made? I have these thoughts and questions all of the time.

When other people see me, they inevitably ask me how I’ve been feeling. I am the Migraine Person. It’s how others see me and how I see myself. I feel like I have lost my actual identity. My personality is nearly gone.

I get so envious of other people. When I was still working, I would see work colleagues turn up in the morning, their only concerns being their work tasks for the day. They completely take their health for granted. Most of the time when I arrived at work I would be gauging how sick I already felt and thinking about how I could best get through the day. My actual job became secondary to my head pain, my sickness and my worry about these things.

I cannot describe how exhausting it is to try to be at work while your head is screaming, you have terrible nausea and your whole body just feels like falling down. Not just for one day. But for maybe three or four days of every week, for years. I have to put on a mask. I try to smile. When people ask how I am, I lie and pretend everything is ok, but in reality I am just doing an impression of myself. I often would go into the work bathrooms, lock the door and just sit on the ground with my head in my hands.

Sometimes I would cry. Sometimes I would splash cool water on my forehead until I had to take a deep breath, get up and go to my next class. Meanwhile, there are people all around me living normal lives, without knowing what a privilege it is to just feel normal, to be able to go through the day without once having to think about how your body feels.

I try not to let this make me bitter. I know it’s no one else’s fault. I know that there is no reason for me to expect life to be fair. So every day I would steel myself and go to work again.

Toward the end of last year, something broke inside of me. I just couldn’t do it anymore. My willpower was used up. I could not continue to just endure and endure and endure. I broke down in tears in the staff room. I had panic attacks. I took immediate leave for the rest of the school term, and I did not return this year.

Now I spend a lot of my time alone and in pain. When you have a migraine, you cannot stand any sensory input. I cannot read a book, watch TV, browse the web, listen to music. Anything and everything makes it worse.

So I spend hours and hours, sometimes days and days, just lying in bed with ice on my head. One thing that no one understands about chronic pain is that it’s not just pain you are dealing with. For hours on end, I am trapped inside my head, with just my own thoughts and my pain. No distractions. I feel like the whole world shrinks down to just my head. Just my thoughts. Just my pain.

It’s hard to describe the effects this has on you. Can you imagine being alone inside your head for days on end, with almost no sensory input? It drives you mad. You literally run out of things to think. It’s lonely. Your only company is pain, pain, pain, nausea, nausea, nausea. Just being stuck inside your head with nothing else and no way out.

Overall, my life feels worthless. I am depressed most of the time. I feel like I have no future, and I have no escape.

I have wanted to die for a long time now. But I have a wife and three kids who need me. I lie in bed in the dark and think about suicide. I imagine the glorious relief it would bring. I get a moment of hope, thinking that I could kill myself to end it all. But I can’t. I can’t leave my three kids without a father. I cannot ruin their lives to save mine.

So even the last, most desperate option is not available to me. But I can’t help thinking about it. When I hear news of people dying in car accidents, I feel a moment of jealousy. Most people see death as a tragedy. I can’t relate to that anymore.

I am on antidepressants, but what is that going to do? You can’t change the balance of chemicals in my brain to somehow make me feel okay with the life I am stuck in.

I do have plenty of pain-free days, but I know a good day is just temporary. I can never think, Things are looking up! or Life is getting better!

Even if I go for a whole week without migraine, I know it is just around the corner, waiting. If I start to feel happy, it feels fake. I know it’s not going to last. It’s exhausting allowing yourself to feel good for a while, just to come falling down again a day or two later. It’s easier to just stay down, rather than lift myself up only to inevitably fall again.

Then I start to think of others, and I feel guilty… all of the time. This is not the life my wife signed up for. She wants a normal marriage. She wants us to be able to make plans and go places. But what’s the point? We make plans, and I often just have to cancel them or go out and try to endure. Either way, it’s not much fun for anybody. And who wants to come home every day just to find your husband sick in bed yet again?

Who wants to be in a marriage where almost every conversation ends up in the same place — my sickness? We can’t look forward to fun things like holidays away or overseas trips. We can’t afford it, because I can’t work, and even if we could, my health would probably ruin it. And this is all because of me.

So sometimes I withdraw into myself. I don’t want to tell her that I have a migraine yet again. I don’t want to be such a drag on our lives. I hate always pulling us down. I feel like she would have been much better off marrying someone else, being able to lead a normal life. Sometimes I can’t even make eye contact. Our life sucks and it’s all my fault. How can you have a healthy relationship when you feel like that?

My wife is supportive and loving, but I feel like sometimes it gets too much for her. When I’m sick for days, she has to put up with it too. It makes her feel alone. Then when I’m okay again, she struggles to feel close to me again. She struggles to be happy around me because she knows it’s only temporary. I’ll be out sick again soon. So it’s hard on her, but then she feels guilty about feeling bad. After all, she’s not the one with the chronic illness. People feel sorry for me, but who is there to support her? I try my best, but I know that I am the cause of the problem.

What do my kids think of me? I have three boys. What do they tell people when they ask what their dad does? That he stays at home because he’s sick all of the time? How can they feel proud of me? How can they look up to me?

It impacts me socially as well. I don’t want to see people. I don’t want them to ask how I am. I hate that awkward conversation. How are they supposed to reply when I tell them that I am no better and there is no prospect of getting better? And it’s the same conversation every time. Like I said, I am the Migraine Guy. And because I don’t ever do anything, I don’t have anything to talk about. I’m just depressing to be around. I don’t even want to go to get a haircut, because the barber will ask how I’m going, and why I’m not at work. So I mostly just avoid people.

I have feelings of panic when I think about the future. What if I can never return to work? We can’t keep surviving on one income. How can I keep living like this? How can I feel worthwhile without a job? I’ll just be a drain on my family and a waste of space. How can I keep going mentally? I feel like part of me has died already. It’s too hard to think about years and years of this.

Over time, I think I have become more stoic. I have learned that a person can endure and put up with pain that you previously thought you couldn’t. No matter how awful you feel, with enough willpower you can force your muscles to move, to get up, to drive a car, to function. Sometimes I imagine my body as a piece of machinery. Make the parts move. Forget you have feelings. Forget you are a human. Just function and survive.

Rollie, 27, Netherlands

I have lived with chronic pain since I was around 7 or 8. This was when the first symptoms began, following a traumatic injury to my knees. Over the years, the pain has spread throughout both my entire legs from hip to toe, and now affects the rest of my joints.

It took about 10 years for me to get a proper diagnosis, during which I was given many wrong ones. I have fibromyalgia. My dad has it as well and was improperly treated prior to his diagnosis, from which he sustained permanent nerve damage.

My condition also comes with a number of other types of pain and non-pain symptoms, some of which affect my sense of touch. For example I am hypersensitive to sensations, especially light contact. There are also neurological components, like sometimes I lose the use of one or both legs temporarily as my knees will not take my weight or will be too stiff to bend.

Living with chronic pain has had a huge impact on my social relationships and my mental health. There is a pretty apt phrase for what often needs to be done: “We’re not faking being sick; we’re faking being well.” People who don’t understand chronic illness and pain tend to think that if we “look fine.” Or if we function at one point, we are fine and can function at all points. If you let it show that something is wrong, accidentally or because you are being genuine, one of two things tends to happen. People treat you like a liar and undermine or seek to set off your issues to “prove” this lie; or, they decide you can no longer do anything at all, and discard or discount you. You might lose jobs. You might lose friends. But keeping up the facade is impossible at times, and almost always regularly taxing. It takes real energy when there might already not be much to spare.

It was something that created a divide in partnerships also. My partner did not understand it and though he tried to be sympathetic in some ways, it was often clear that it was a burden to him and a foreign concept.

He did say that it was hard for him to imagine what being in pain basically all the time felt like. A little while ago, he developed a chronic pain condition of his own, one that currently there is no solution for. Though I saw that he struggled at times, especially in the beginning, I would know part of the reason behind uncharacteristic anger or frustration, and try to be understanding. I knew he was learning. He has learned to cope much better with his issue, and there’s something we share now that was always divisive before.

He understands what having chronic pain is like. He understands the sometimes odd limitations or workarounds you have to find and little inconveniences you must be aware of. In that way he knows a core part of me in a way he couldn’t have before — because he just didn’t get it. I do wish that he didn’t have his pain, but if he has it anyway, I’ll take the upside that at least neither of us is alone with our issue.

John (a pseudonym), 35

I’d prefer to use the pseudonym because I’m currently job hunting and don’t anyone to think they’re hiring a walking health problem. I’ve been out of work since January trying to deal with this enough to get me back to a state of normalcy.

When I was 29, I got myself into the best shape of my life. I had lost around 30 pounds, built up much more core strength and improved my cardiovascular health. I felt magnificent!

Unfortunately, about six months into this routine, I started getting regular migraine headaches that made going to the class three times a week difficult. Sometimes the classes helped the headaches go away; sometimes they intensified them.

These migraines came and went for several years, generally getting steadily less frequent, while a different tension and pain started taking its place. I finally saw a doctor when I couldn’t live normally without taking constant doses of over-the-counter anti-inflammatory medicine. This would have been 2017, when the cost of a single doctor’s visit finally didn’t leave me broke for a month.

I consulted with an orthopedic surgeon who confirmed that I needed to have a disc in my cervical spine replaced. I proceeded to go through with the surgery after an unsuccessful insurance-mandated physical therapy program that only lengthened my suffering. My surgeon had already confirmed my injury through X-rays alone, but in order to get the MRI needed to get the surgery approved by insurance, I had to spend an extra two months in agony.

Several months after that surgery, a rheumatologist I saw thought that I might have fibromyalgia. He prescribed a muscle relaxer, which helped only marginally. Several more months went by and I kept feeling fatigued the way you feel after having a bad bout with the flu: like you’re not quite sick anymore, but your body is still in pain and worn out from it. Nonstop, I felt this way.

A few months went by, and I made another appointment with my [general practitioner] to examine a swollen thyroid gland. After a simple blood test confirmed I had Hashimoto’s thyroiditis, an autoimmune disease where your thyroid gland is slowly being destroyed. I believe that this is the major cause of my current health issues. My body is constantly inflamed because it’s constantly destroying itself.

Joints all over my body hurt intensely, I never slept well, I had a constant headache and I always felt like I had a hangover with how absolutely poisoned my body felt. Concentration at work became an elusive goal, and my emotions swung from one extreme to another.

I ran out of paid time off during this time, and I was required to work a full 40 hours every week, so an appointment with a specialist in the middle of the afternoon meant that I would have to return to work and stay there long enough into the evening to make up the difference (even if I had no work to do). This lasted for about another six months, and it felt like torture.

Finally after years of effort trying to improve my health to no avail, I had two major successful steps forward. The first was that I got my rheumatologist to prescribe a low dose of Naltrexone, which eliminated joint pain that I had all over my body and helped to keep my back inflammation from its worst levels.

The second major step forward was when I finally got an endocrinologist to agree to an adjustment in my thyroid medication. For the first time in years, I felt emotionally and psychologically normal again. I’m now also on an antidepressant to help with anxiety, which seems to exacerbate my symptoms. I’m always anxious about hurting, which makes any additional anxiety send me over the edge.

Still, even with the right medications, I still can’t stop the chronic pain. I wake up in pain. I go through my day in pain. I go to bed in pain. And it may continue this way for decades. Doctors just don’t have any more tests they can run or medications they can prescribe. This is the new me.

My mental health was absolutely trashed. I went from being healthy, fit and feeling great to feeling like I’m 20 years older than I actually am. I had to learn to accept that this is now my normal state of being. That every single day of my life will involve some kind of pain. Some days or weeks will be worse, and I will rarely feel well. I’ve lost the ability to enjoy my more physical hobbies, and I may never regain it. I had to face the fact that I needed to grieve the loss of myself, which wasn’t something I was willing to do for quite some time.

My wife and I stopped traveling together, our sex life was affected, and I became harder and harder to be around from me always being grouchy and tired. We definitely had other problems beyond my chronic pain, but all this together drove us to agree to divorce for about two weeks while continuing to live together. However, after some hard heart-to-heart talks, we decided to give it another shot.

We’re doing better, and we’ve both acknowledged where we need to do better for each other, but my chronic pain is something that simply had to be accepted for what it is. I cannot do anything to stop it permanently, and to be with me is to accept that and the consequences that come with it.

People who don’t live in chronic pain cannot wrap their heads around what it is really like. Pain grinds away at the best parts of your personality, and it will destroy them if you let it. Things such as last-minute requests for social gatherings with friends that would excite a healthy, normal individual can seem like an insurmountable wall of torture to me. Every day, just being awake and active is enough to drain my already-diminished well of energy. Asking me to do more without time to mentally and physically prepare for it feels like trying to run a second, unexpected marathon right after you thought the first was almost over.

It’s hard having to be patient with those who don’t have patience because they can’t understand how a person could feel the way I do. “Can’t you just [blank]?” is an especially infuriating thing I hear all too frequently, as though the fix to my problem is just a supplemental vitamin away.

I don’t know what my future holds now. I had plans for my life that aren’t doable anymore. I am a little bit lost as to what my next move should be because there’s always that nagging feeling that whatever effort I put into something will just be swept away by the next wave of health issues.