Posted in chronic pain, health, migraines

16 Things People With Chronic Pain Want You To Know

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It’s not just in our head. The pain is there and always would be even if there is no apparent reason for it. Our pain is real and will not just go away after we take some pills for a week or two. It would always be there and we have learned to live with it. Here are 16 more things we wish you knew about us!

1. We Don’t Make a Mountain out of a Molehill

You think you can imagine our pain? Now multiply that amount by 10. No matter how sympathetic you are, studies have proved that people tend to underestimate other people’s pain. Chronic pain by default is hard to imagine unless you have experienced it in your life. It’s invisible, but it is always there. We urge health care not out of hypochondria or the need for attention, but because of our severe physical state.

2. We Need to Balance Actions Carefully

We use the Spoon Theory.  We have a limited amount of spoons each day we could use for different actions. Getting up, getting dressed, taking a shower, driving, walking, picking up the phone — each action requires us to use one of our precious spoons. On good days, we finish with a few spoons left so we can do something fun. On bad days, we borrow spoons from the next day and need extra recovery afterward. So if we suddenly cancel our plans with you or tell we can’t do it now — it’s just because we ran out of spoons today. Try to understand this.

3. We Struggle to Find a Good Doctor

Sadly, a lot of health care pros lack knowledge in pain management because it is rarely part of their training. We often visit numerous specialists before receiving a proper diagnosis and wait months to years to see a real pain specialist for treatment. Doctors often fall victim to the cognitive error of underestimating another’s pain and a small number of doctors are willing to take the legal risks involved in prescribing powerful pain pills.

Same goes with the nurses. Finding a good one who can really understand and help us relieve the pain is hard! Luckily, there are some online schools like Sacred Heart University that are training future nurse leaders to overcome these issues in the future and provide better care for patients.

While you may think it’s crazy, we’re willing to travel further to find a good nurse with this kind of training and rave about it when we find one.

4. We Are Not Lazy

Remember the limited amount of spoons we have? Now add the fact that it takes twice as much effort for us to complete even simple things. We try harder than other folks, yet we still manage to accomplish less.

5. We Try to Look Our Best

“But you don’t look sick” is one of the most common phrases you hear if you have an invisible disease. Well yes, we try to look our best even on bad days when our body explodes from pain. We dress up carefully to cover up our bruises or swelling, take painkillers at the optimal time, and rest before going out. We would love to pass as normal as much as possible! Even if we feel pain, we would keep it to ourselves until the moment we step into our apartment and just collapse.

6. We Don’t Ignore You

Sometimes our pain occupies too much space in our brains and we simply cannot focus on anything else. Pain can be very distracting and mentally draining, so please forgive us when we can’t give all the attention to you.

7. We Know Our Illness Won’t Go Away

It’s always there. We can’t escape. And yes, we have researched all the possible options. If there was a cure, we would know about it!

8. We Are Not Drug Seekers

Sadly, we need to explain that both to the doctors and folks around. We don’t want drugs. We want anything to make the pain go away even for a little while. So yes, sometimes our treatment requires taking opioids or medical marijuana. We treat those just like any other remedy. And no, we are not particularly fond of the side effects either.

In fact, as the Cleveland Clinic explains: Addiction appears to be distinctly uncommon in patients without a prior history of addiction. Addiction is a psychological phenomenon that isn’t caused by chemical components of the drugs and typically requires a setting different from the one we have. We take our drugs under the supervision and come back home to the loving family, unlike the street-users.

See remainder of this article @ Chronic Pain

Originally posted on my niume.com blog 

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Author:

Writer, poet, blogger, advocate of mental illness stigma

19 thoughts on “16 Things People With Chronic Pain Want You To Know

  1. Oh my yes. I don’t have it severe like you, but I do have chronic issues. And no, people do not understand! And especially since I have a mental illness, as well. Might as well, just sit in the corner, sucking my thumb at times.
    I’m so happy to hear you have a great dr!! And thanks for the spoons analogy! So apt!
    Thank you for following me.

    Like

    1. Pain is pain. Everyone’s pain is their own pain and it isn’t really comparable, so don’t diminish your health issues, as you are just as important. As far as mental illness goes, count me in also. I went through years of major depression, coupled with therapy trying to figure out how to heal from PTSD for childhood sexual and emotional abuse. I’m 60, and it took twenty years to figure it out. That’s a lot of therapy! I believe chronic illness/pain go hand in hand with depression, how else are you supposed to feel if you’re isolated.

      Just think how strong you are, and pat yourself on the back for that. There will always be people out there who judge or are opinionated, not knowing when to stitch their lips shut, so forget them, you are you. So happy we’ve connected. All the best. Hugs xo

      Liked by 2 people

      1. Thank you, Lady. I’m in therapy too. Hopefully I’ll be better soon too!
        Oh yes, definitely a strong link between pain and depression!
        I’m happy to have met you too!
        What’s your first name? Unless you just want me to call you Lady! 😉
        Hugs to you! Gentle ones!

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  2. This is all so true. Today I have to drive (yes drive) 2 hours to visit my wonderful doctor. I make sure I do a couple of pit stops on the way. Once the drs visit is over I and my friend who comes with me go and have lunch and we do a bit of shopping, before we head home. The next two days will be couch time and possible more pain drugs. Its worth it…so yes I use spoons from Tuesday and Wednesday so I can get there and back. She is a great dr and manages all my chronic health conditions.

    Liked by 2 people

    1. Hooray for good docs! I’ve had ones who have given me that “another headache?” look. That was decades ago, but have a great family doc now. So sorry you have to make a two hour trek though, but if you’re getting the correct treatment, who wants some useless, unempathic doc. Thanks for commenting. 🙂

      Liked by 2 people

      1. what a long day….home with a cuppa. yes my dr is amazing. I have had drs like that. headache? fibro? chronic fatigue…its all in your head….thyroid? until I got diagnosed with a lung condition and a few more finally drs stood up and took notice.

        Liked by 1 person

      2. I love the triage nurses at the ER. “I’ve got a 9 day migraine and it just won’t quit”. Nurse: “Someone will be with you shortly”. Translation: 8-10 hour wait due to non-priority and it’s me and the guy who needs stitches for his finger competing!

        Liked by 1 person

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