I started thinking about this topic recently, about how there are certain things about living with chronic pain that those around us will never understand. That a healthy person just can’t (sometimes won’t) understand.
As I thought about what came to my own mind, I asked the question “What are the things about living in chronic pain that healthy people will just never understand?” on social media and got a variety of responses.
Things that those with chronic pain wish healthy people could understand
1 . Why I Don’t Take My Migraine Meds at the First Sign of a Migraine:
Why? Because I live constantly with the first sign. You just pray that it doesn’t advance to the point where you have to take something.
I had this conversation with my Psychologist and he didn’t get it. “Maybe you’d have fewer/less pain if you just took the meds at the first sign.”
That’s all well and good, but when you only have 6 pills a month and it’s a rare month when you only have that many full blown migraines, you learn to hoard the meds, to conserve, and to ask “Is this migraine Relpax worthy?”
I'd love to just take something for this pain, too bad I'm all out. #relpaxworthy #spoonielife #migrainelife Share on X– Note – This applies to ALL chronic pain (not just migraine) sufferers that take any sort of prescription meds for their pain. Probably even moreso now with the new laws about pain meds.
Anyone who takes prescription meds for their pain never has enough meds to get them through the pain they live with.
We are always in pain, we just do the best we can to get through it. We don’t want to take the prescription pain meds for many reasons, but now that the gov has made it so difficult to get the meds filled, we really can’t take the meds when we need to.
We are always in pain, we just do the best we can to get through it. #chronicpain #spoonielife #fibrolife Share on X2. We are Always in Pain:
Even those who live with us forget that we are always in pain. That when they ask how we are and we say “OK” that that’s about as good as it typically gets. There is always some level of pain, the best we can do is learn to focus on something else and not think about it.
It's chronic pain, that means we are always in pain, no matter how it looks. #chronicpain #butyoudontlooksick #spoonielife Share on X3. We Aren’t Lazy.
We aren’t sitting in front of the TV or staring at twitter because we are lazy, or even bored. We are doing it because it’s all we can do, and the idea of doing nothing at all is kinda scary.
So, we do what little we can, we try to watch TV to take our mind off the pain, but mostly it’s mindless TV and we may as well be watching paint dry. We stare at twitter or Facebook in hopes of staying engaged, not because we are avoiding the mountains of housework, and certainly not because we don’t see it or feel bad for not doing it.
We have a chronic illness, that doesn't mean we are lazy. We are doing the best we can. Please don't judge. #chronicillness #spoonielife Share on X
4. We live in a Constant State of Guilt.
We have a long list of things we feel like we “should” be doing. But, we know that in the end that the one thing that we need to do most is take care of ourselves, so that we can do the other things that we absolutely NEED to do.
We feel guilty for the way our illness affects our lives, for the way that it impacts others, and causes them to pick up the slack. We feel guilty for a myriad of things, and often for everything.
I have chronic illness, and live in a perpetual state of guilt. Don't make it worse. #chronicillness #guilt #dontjudgeme Share on X5. That we really don’t want to talk about it all the time.
But, sometimes we can’t stop ourselves.
You try not talking about the thing that you live with 24/7, that keeps you up at night, that gets in the way of all your plans.
Heck, we’d rather make up a new excuse for why we had to cancel plans than to give you the same one yet again. So, if you think we talk about it a lot, think about how much we are keeping ourselves from talking about it.
6. We are not the person we want to be.
But, it’s not because we aren’t trying. There is much we want to do, and the way we often react is not really who we are, it is the pain speaking.
Please give us a break. Know that we are trying to be the best person we can be despite the pain. And, if we react to you in anger or another negative way, remember that it’s likely the pain talking.
Chronic Illness keeps me from being the person I want to be, but know that I'm trying. Share on X
What are the things about living in chronic pain that healthy people will just never understand? #chronicpain #migraine #fibromyalgia
— Julie Ryan (@drunkitty2000) September 5, 2014
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Jane says
People will never understand what it’s like to live with chronic pain or chronic illness. There are so many factors involved. With chronic pain comes depression and anxiety. Something I never had before this nightmare started. I’m thankful I have a Dr. who caught it right away and got me on track with meds for my mind.
After being in a car accident a few years ago, I have had a lot of chronic, disabling pain. After seeing several different Dr’s, specialist, neurosurgeons, orthopedic surgeons, MRI’s, Physical Therapist’s, they finally figured out I had 3 herniated disc’s in my neck. Just a start of the nightmare. After having two bilateral shots in my neck and the second time hitting a nerve with the needle, I was done! The neurosurgeon I was seeing wanted me to start pain management. I was not happy about that. I switched insurance and found a awesome neurosurgeon who helped me. He suggested a 3 level fusion. I just wanted to feel better and even though I knew it was going to be major surgery, I was willing to take that chance. After surgery and being in a neck brace for 9 weeks, my neck felt a bit better but I still had a lot of pain in my right arm/shoulder area. A check up with the neurosurgeon determined I had a should issue and to go see my PC Dr. She thought I had a rotator cuff tear. Back to PT to try and fix that. No good results, another MRI and sure enough, that’s what I had. Off to yet another Dr. and he recommends surgery because a torn rotator cuff does not ever get better over time. I had the surgery and am still recovering from that. Two major surgeries in 8 months time. I have not been able to work for the last two years. The guilt is overwhelming not being able to contribute to the household or even do common household chores such as laundry. Can’t lift anything heavy. When people see me, they say I look good. My comeback is to say, I wish I felt as good as I looked!
I forgot to mention I also have 3 herniated disc’s in my lower back. I am in pain one way or another 24/7. Nobody understands and it makes me feel old. I can’t do the things I once did and enjoy doing. It sucks and nobody understands. Until anyone has been through what we have, they will never get it.
Julie says
I feel you with the herniations. I’m not to the point where I’m willing to do major surgery, but after a year of major pain in my neck/back/shoulder I’m willing to try the epidural that they suggested a year ago. It’s also been back and forth with me between shoulder and neck (actually the herniation are thoracic which I guess is why they aren’t even considering surgery). I hope you find that your pain is greatly reduced once all of the pain recovery settles out. You have nothing to feel guilty for, you are doing the best you can. Right now your job is to focus on you.
Karen says
I am grateul to have found your website. Ive had FMS & CFS since 1985. I also suffer from migraines and have acute osteoarthritis and bone on bone in my rt. knee. Full knee replacemt. has been diagnosed and advised but I am struggling along with the shots but do get enough relief to avoid surgery. Dr. has a hard time viewing my xrays that Im not requesting surgery. But I know eventually I will have to bite the bullet. I have two large dogs that are high energy and truthfully I cant imagine recovering at home without them nailing my operated knee. I am home alone during the day…one cant expect a friend to be there all am & afternoon until hubby gets home!
Julie says
Hi Karen, I’m glad you found your way here, too. I look forward to getting to know you a bit better. I can imagine that if I was in your shoes with your knee I’d likely be having the same doubts and questions and be putting it off as long as possible. A couple of thoughts did come to mind for you, have you looked into home health aides that could check on you during the day while your husband is at work? we had to do that for my Dad during one of his recoveries and it was covered by his insurance. You might also have to corral the dogs to a different area than where you are recovering to keep them out from under you. I have two cats and even they can be a bit much at time and would likely be all up under me right when I didn’t want them to be.
Jackie says
You posted this at just the right time. I love 3,4, and 6. With the weather getting colder my symptoms are picking up, I’m having a harder time falling asleep so I’m typically getting out of bed at 11am right now. I feel like a bum even though I can’t change anything. And I’ve been having so much leg pain recently I had a dream last night that I had to have surgery because I couldn’t walk otherwise! I blame it on the cold I’m fighting right now, it plays tricks on my brain haha
Julie says
Thank you for reminding me that the weather is changing and that is a huge part of why I feel like crap this week. Damn you fall!
ChronicMom says
This is a great list. I especially like your point about why we don’t take medication at the first sign, I think that is so hard to explain to someone who has never been there. I have to go through this ridiculous process that takes weeks to get my prescriptions filled, so yes, I am very conservative about using them!
Julie says
The migraine issue has been brought up to me several times, but I didn’t even think as I wrote it how it does apply to non-migraine chronic pain, too. For those, who take prescription pain meds for their chronic pain (any kind of chronic pain) it’s the same thing. We get a limited supply that is almost never enough to cover the amount of pain we deal with before we can get it refilled. Then for the narcotics with the new laws about getting it filled, good luck! I’m sorry you have to deal with that.
Melissa says
Nailed it on the head. I’m so sick of talking about my pain and related ailments. When anyone sighs or flat-out says they’re tired of hearing about it, I tell them to stop asking how I feel and I say something like ‘You’re tired of hearing about it? I’m tired of living it. I have no escape from my body and have no control of my body.’ It’s physically and emotionally draining to be in constant pain. It’s anxiety-provoking because you just know it’s going to spike or some other symptom will rear it’s ugly head. I’ve not had one day without pain since a a few days post-gallbladder removal surgery on 2001. Six months later, the nerve damage pain began and I went downhill from there. I’m amazed at my inner strength that I’ve maintained my sanity and sense of humor in the face of intense, chronic pain lasting more than a decade.
Julie says
I’m sorry you’va had to deal with this for so long. Chronic pain is no fun, having people be jerks doesn’t help.
Melissa says
Amen. The fact is that, as humans age, most people will experience pain. Some people won’t get it, won’t understand another person’s pain til they feel it themselves.
Julie says
I think most people can’t understand until they are there. I’ll say it’s even true for myself looking back, there were many things I didn’t understand about life with chronic pain or disability until I was living with it (even after helping care for my grandmother who dealt with so many of the same issues I’m dealing with now).
Astrid says
I don’t have migraines so didn’t know #1, but I can relate to most of the others. Even so, I feel guilty for relating to these, even thinking about relating, because I don’t have a diagnosed chronic pain condition (except possibe IBS which causes the least bothersome of my symptoms).
Julie says
there is no need to feel guilty. IBS is pretty nasty, but it sounds like you have other things going on that just aren’t diagnosed. Chronic pain is chronic pain, diagnosed or not.
Heather Hammel says
Couldn’t have said it better!