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7 Things I Wish People Knew About Chronic Pain (Over the Holidays) [CC]


Hello, hello!
Today I wanted to talk about some things I wish people knew about chronic pain over the
holidays 1) Pain Fluctuates: my physical abilities
can change throughout the day or from one day to the next. There are times where even
though it’s still painful, I am able to walk, but having severe chronic pain is like running
on a gas tank but it’s never full and you can never read the meter. I can run out of gas unexpectedly and then you can find me crawling on the ground. I do what I can when I can and I try my very
best to participate. 2) I Don’t Find the Holidays and/or Family
Gatherings an Appropriate Time to Ask Me About My Health: These are times that I want
to be present with be with my loved ones and not necessarily be put into positions where I feel obligated
to have repetitive discussions (because you’re not the only one who’s asking me) or receive
unsolicited advice about my pain and health. It’s not a fun topic, in fact, it can make
me very sad and frustrated. If you’d like to catch up, if you’d like to learn about
it, I’d probably be more open to it in a private setting where I feel safe to emote
and express how I feel, give me a phone call, send me an email, and in fact an email is probably gonna be better for this fatigued and socially anxious girl. But personally, I don’t think it’s very
fair to ask me to reveal things that are deeply personal and upsetting, on a holiday that
we aspire to be filled with joy. 3) Please Don’t Offer Me Advice About an
Illness You Do Not Understand: First, know that I appreciate you, and I am so grateful that
you want to help, but more than likely I’m already aware of what you’re about to suggest. It’s… At this point it’s gonna be hard to tell me anything I don’t know about or haven’t considered. People often
hear about my chronic pain and illness and immediately offer up easy fixes, “Have you tried yoga?
Exercise? Green tea? So and so diet? You just need to lose weight! You just need to think
positive! You just need to push harder!” [exasperated laugh] Oh God.
It’s frustrating when people simplify chronic illness and chronic pain, it can feel like
you’re not taking it seriously, like you don’t think it’s real, you think the pain
is just some tension from the work week or this fatphobic idea that if you are not thin,
then it is your weight that is causing you pain. Or do you offer medical advice to cancer
patients when you have never experienced cancer yourself? I hope not. For the record, “pushing”
myself, is something I do with or without advice, because I’m a stubborn little leo.
The only thing it gets me is more flare ups and more pain. “Try harder?” I do try,
every day, to imply otherwise is so offensive to me, it is a struggle to get out of my bed
because of my fatigue and because of flare ups with my back pain, sometimes it hurts
so much I can’t even sit up, so I must lay still flat on my back, sometimes for days
at a time, because of lack of accessibility I struggle going out and seeing my friends,
I never thought I would FANTASIZE about cleaning my room before but I do. It becomes a mess
but I have to wait for the energy to come. Before I get, “But you should TRY!” I
do try actually, I have a yoga mat in my room, practice my stretches daily, practice morning
and night meditation, and play healing tones during sleep, and honestly, that’s
more for my morale, that’s more for my spirit, for my mental health, it doesn’t really
improve my physical pain. Though these suggestions are often helpful to folks with tension or
injury, this is not the same thing. 4) Please Understand If I Can’t Participate
in All Activities: Chronic Pain doesn’t care if I’m having fun, it doesn’t care
if it’s the holidays, or if I only get to see you guys once a year, flare ups are triggering
by physically exerting myself and sometimes they just come at random and there is nothing
I can do about it. As much as I can, I try to not allow those surprises, so I have to
know my limits, I have to know when I need a break, or when I’m just DONE. There are
so many times that I WANT to do something, but my body can make it very difficult.
5) Just Because I May Put on Make Up and get Dressed Up and “LOOK great!” Doesn’t
Mean I’m Not in Pain: Even if I “look great” or I “don’t look sick” it doesn’t
mean that I’m not actually in a lot of pain, and I’m not making my absolute best effort to
be there and to be present. Even if I’m laughing, smiling, or speaking, it does not mean
I am not in pain. I am ALWAYS in pain, just sometimes the pain level escalates. I live
with this, I fight this, this is my every day, my every breath, and I do my very best
to do the little things that make me feel better about myself and my aesthetic.
6) Sometime Chronic Pain Can Affect The Way I Think: the fatigue can make me foggy brained,
can make me distracted, even affect my eye sight, sometimes I can become irritable or
easily frustrated because of the pain and I apologize in advance if ever I act in a
way that is a projection of my pain. 7) How You Can Be Supportive: It does not
help to dismiss my pain, to simplify it, trivialize it, to tell me it will get better one day
when you are not in complete understanding of what it even is, it doesn’t help to impose
that onto me. What I could really use is GENUINE support, acknowledging that this is really
happening to me, offering me validation for how I feel, and then just asking me how you
can be of support, asking me, ASKING me, if I want to talk about it, if I would like to
vent, if I need space, if I would like to be alone, ask me if it’s okay to ask me
questions, if it’s okay to offer me advice, just ask me, ask me what I would like and
how you can be supportive to me instead of assuming you know exactly how to do that.
I love you all very much, I hope you have a wonderful holiday, and I will see you guys
eventually.

54 thoughts on “7 Things I Wish People Knew About Chronic Pain (Over the Holidays) [CC]

  1. <3 May I just say I adore your videos so much, honestly they have given me so much LIFE <3

    I discovered your channel from Kat Blaque who shared your vid re: Kylie Jenner & the wheelchair & have been bingeing ever since.

    I've lived with chronic pain & chronic fatigue (from having severe endometriosis since age 12) for almost a decade. I recently made the decision to get a wheelchair myself after finally publicly outing my disability this year & I call it the Freedom Vehicle, so I totally feel you on the endless love for wheels :3

    Thank you for this being you & putting yourself out there for all the other people who don't have the spoons to do it themselves. You are truly a gem. <3

    Sincerely,
    Fellow Chronically Ill Sister, Victoria x

    PS: Wishing you spoon-filled holidays. <3

  2. wow, that was the best right on spot manual for people without chronic pain… i don't know if i should laugh or cry… those things you said about all the advice even close family comes with… its so frustrating, but i think we should not judge them… it seems impossible for people who have not experienced chronic pain to understand… my favorite is when they say.. Everybody have lower back pain…. just man up. Even the doctors seems uneducated about it. Merry Christmas and i hope you have some good days, hugs 🙂

  3. This is really important. I found you through tumblr and posted you on my second twitter page LGBTQIAPoC and I love hearing your thoughts. I have some family that have chronic pain so listening to your perspective actually helps me a lot. thanks for this.

  4. Thanks for this. It's so easy for people to ask questions without really thinking about how it will make the other person feel.

  5. This is so accurate! Also I had flat feet as well. But I had surgery November 2014 on my left foot and healed up and then surgery on my right foot December 2015. The kneeling scooter has been such a helpful tool through out all of this. How are you doing after the surgeries?

  6. OMG the fantasizing about chores thing is so real, just. holy shit. before i got sick i would be messy on purpose, i hated cleaning sooooo so much. now i would give anything for the energy to do all my dishes or to vacuum. people just have no idea.

  7. I absolutely can't stand this whole, "just push harder" mentality that people have when it comes to chronic pain and even injuries that heal over time. I myself do not suffer from a chronic illness, but it gets so frustrating seeing my relatives with injuries and my friends who do suffer from chronic illnesses pushing themselves during a flare up just because they're afraid to be seen as "lazy". And I don't mean pushing themselves in the general way you guys do..I can't relate to what you go through, and I feel for you so much. It just bothers me when I see my friend writhing on the floor in pain, then force herself to go work on a "friend"'s car because that "friend" would give her shit for being just fine earlier in the day. It's not right. Your health should come first. :/

  8. I so resonated with what you shared here. I deal with pretty restrictive food and environmental sensitivities. I get asked to talk about my problems with food while eating all the time. I've asked people sometimes repeatedly that I'd like to just enjoy my meal. and other people who launch into cures and solutions for something they know nothing about really. people want to come and hug can often have sunblock or perfume or use conventional laundry detergents. they don't ask if it's ok to hug. i can have bad reactions. they are so casual about it. it has helped me realize and try to be more aware of when others are in a similar but different set of conditions.

  9. This is really informative! i knew most of these, but I had no idea of the fluctuation. The few people I've known with chronic pain didn't have fluctuation of any kind, so it's good to know! Thanks for posting this <3

  10. I've been told, in all sincerity, that all I need to do is let Jesus Christ into my life, because he will heal me and take my pain away.

    Like, I'm sorry, Auntie, but Jesus ain't done door-to-door healing in about 2000 years. And until he shows up, I'll stick with what I'm doing.

  11. my boyfriend has severe chronic pain, and he is definitely a person who doesn't like to discuss it. my mom, on the other hand, is very open about it so I was really used to her openness regarding chronic pain issues. this video was extremely helpful to me in terms of communicating with him and giving me some more knowledge/understanding with chronic pain. thank you so much!!!!

  12. Oh, the suggestions. I live with chronic mental illness and the unsolicited advice still upsets me. Yoga, exercise, losing weight, meditating, essential oils, vitamins, certain diets, avoiding foods, I feel like I've heard it all. Sure, some things work for me, but that doesn't mean it works for everyone with mental health concerns, or even people with the same diagnosis as mine.

  13. thank you for this. thank you so much. I'm in a bad flare right now and this video helped me explain so much.

  14. Fantasizing about cleaning my room, YES! I had a conversation with a fellow spoonie about how I'm jealous of my dog's energy level. Silly but true.

  15. I just found you and yes, I get cures ALL the time on my terminal cancer. The whole positive attitude thing is infuriating. If only we could will ourselves into being healthy!

  16. I love the way Annie talks. She talks so slowly and clearly. There are no meaningless words in her sentences. She is straightforward and mindful of her language. This makes the content so much easier to process and understand. I wish my school teachers talked this way!

  17. The first was so spot on! Some times I can run around and play with my family, but other times it is literally impossible to get up. And I can go from hanging out to isolating alone in minutes. Also no, going vegan won't help.

  18. Something I'd love to yell: "chronic means forever". That means now, even if I'm not showing it. Please don't tell me to get well soon

  19. You're saying everything I hear all the time from my family. I'm a quadriplegic confined to a wheelchair and if there's something I can't do they will tell me to try harder. Trying harder gets me nowhere when I've spent over 8 years trying to do more. I can do more now than what I could do 5 years ago but somehow those things get overlooked when there's something I physically cannot do. Loosing weight won't change my spinal cord injury. Drinking tea won't make me loose weight. Someone telling me to try harder is insulting when I know my own limits won't allow me to

  20. I have constant pain in my left knee that I have had for practically my whole life. Being in my late twenties, since it happens all the time, I seriously get the urge to punch people when I hear "you're too young for that… You should take better care of yourself" (still no official diagnosis, but 5 different doctors have told me 5 different things.)

  21. I'm 13 and it started when I was 11 :/. The doctors are still figuring it out (definitely taking their time). It seems to be getting worse and worse. I take pain killers everyday, 6 pills a day. 3 in the morning, 3 at night. I have severe depression and anxiety. Having pain almost 24/7 doesn't help. I was diagnosed with CP in 4th grade and walk on my tip toes. And yet people still tell me it's all fake. People tell me I just need God. People tell me I'm just using it as an excuse (mostly my dad 😒). Nobody seems to really be taking it seriously. And I hate it. I'm an artist and writer, and to know that I might not be able to draw in the future makes me wanna die. I'd rather die than not be able to draw. Yet NOBODY SEEMS TO BE TAKING ANYTHING SERIOUSLY BECAUSE ITS NOT OBVIOUS AND I CAN STILL DO STUFF. I'm just so used to it that I can act as if there's nothing really going on in my back or arm or leg or EVERYWHERE. But I mean, go and believe the girl who's obviously faking schizophrenia and cutting her hand up just for attention.

  22. All those suggestions.
    And the only one I like is green tea.
    Because green tea soothes my bitter angry soul and replaces it with warmth and a better type of bitterness so I'm not so salty.
    It doesn't help my pain.
    But it is HECKIN DELICIOUS.

  23. I have had 4 back surgeries and also have MS. I have screws and nuts and bolts in my back and neck. I HATE when people ask why am I still hurting after the doctors have done all the surgeries. I also HATE when people suggest that it's all in my mind.

  24. that fantasizing over cleaning is so true. and man i hope to heck no one asks me my health status on christmas day. that is going to be so awkward… and

  25. Since I have mental illnesses as well as chronic illnesses even though my doctor medically diagnosed me and everything my family still tells me it's all in my head and I have overheard people complain about how ANNOYING I am when I complain so I am not allowed to complain bc even when it is obvious if I confirm even being a little nauseous I get yelled at about how tired people are of my shit and if someone spills a couple of crumbs on the floor and I don't pick it up right away then what am I doing lying in bed all day even if ur in pain u just gotta suck it up and deal with it and clean and cook and find a job willing to hire you. Even if I walk around hunched back it doesn't matter. I mean just the other day I was walking I'm fine, right? They don't see that when I can't get up I can't get up they don't notice everytime I hold onto the wall or when I'm on line for my medication at cvs and I'm sitting on the floor shaking bc I can't stand but I have to wait on line and I'm literally crawling without caring about the dust on my pants that seems to bother everyone else…no one sees me rocking or shaking in bed when I'm in pain and when I take pain meds it doesn't even give me a full relief and no I cannot physically take opioids bc I'm allergic to some and the ones I'm not will only make some of my chronic illnesses worse and they don't see that if I do have to go somewhere on my own either I just CANT GO or if I even have a little magic ability to go but still not enough I will have to use a cane and pray and pray and pray I don't bump into anyone I know bc obviously since I was walking really fast last time they saw me over half a year ago I'm totally being dramatic only my husband and my mother knows who's also disabled and so are my sisters but theirs are different I use to take care of them and now I'm becoming more and more disabled and I don't understand it and I just keep trying to hide it and hide it and it's getting harder and harder and harder and I don't know what to do and I'm sorry I don't know why I just vented to you randomly on your channel that was probably really weird, this is what happens I guess when I can't go to therapy anymore bc I can't physically GO there on my own anymore. I was literally discharged from my outpatient because they couldn't handle my constant physical problems and that they'll think about taking me back when I have them all "under control" okay I'm done venting now sorry…that won't happen again. It just gets lonely not having friends… loved the video. Thank you for talking about these things. They really help. Thank you….please continue. It helps people like me. You help me. Take care.

  26. You are so right in all you say the people we try to talk to have never had any pain at all they don't no. I no 35 2 hips surgery right hip tear and my whole spine is gone l4 l5 etc I no how you feel beautiful lady I'm in rage with my pain Peace

  27. I've been told to do yoga, I've been told about our Lord and Savior Jesus Christ, I've had spells cast on me, I've had my co-worker tell me not to go to the doctor or take my meds because "it's all in my head" because he is very against big pharma and is very spiritual, and the biggest Whopper, BEE STING THERAPY. Honey, I'm allergic to bees. How bout no.

  28. This is really really true!ive had ohhh.goodness,fightfull chronic pain since age 22,im 37 now and,oh the advice!you should you should..this worked for so and so…and 'your not patalyzed,why would u be considering a wheelchair or your too skinny and have to eat this diet,laying flat on my back in a dark is the best!!!big time meditator here too!,wild,i have been in the hospital since ten am,i left at five pm today!!all regarding this!and just because your not cringing and going OUCH OOOCH OWWWW!all day,doesnt mean anything!i dont do that coz if i were to id be in more pain by cringing and tightening up!and you nailed it!genuine support respect!!:)i totally feel you!

  29. I just try to stay positive, but after seven years, you do the best you can, so don't mind if I tell you to fuck off. Never want to take pills

  30. This video is almost exactly what I go through. I love this. From one stubborn Leo to another. Thank you for posting!

  31. God this video was so spot-on! You said everything I’ve been telling my friends and family (& acquaintances) for years!!! The worst is the totally unsolicited advice from people who don’t have chronic illnesses. The favorites are “thoughts become things”, “mind over matter”, and “X diet cured my friend” (who usually also has an incurable illness, by definition, but the person telling me that don’t get the difference between being “cured” and being in remission). I also hate how any display of happiness is seen as being “better now”. I have a pain tolerance like no other, but people don’t get that. I live with pain every single day, so I HAVE to smile and push through it; otherwise I’d never have a happy moment in my life again

  32. Excellent video. Yes and then there's the "Spiritual or LightWorker " community that make you feel you are low vibrations or don't Love enough,etc making you feel even worse. You know this isn't true. And then the Religious crowd about you don't have Jesus in you Life!
    And yes if we put make up on then the Dr.s and staff even ,think you're doing better no matter what you went in there for as well as other people So this is such a great video on this!Thank You.💗

  33. I still live at home cause I’m a teen, and my mom says all these things to me constantly. Or she says stuff like “I was disabled and I had a job” so she says I’m making up excuses when I say I’m too tired or in too much pain to go out and communicate with others. It’s so difficult to cope with chronic pain when your doctors won’t tell you what’s wrong and no one believes you. Especially when your transitioning from high school to college.

  34. Ugh… The advice… I have severe bipolar disorder and obviously people who once have been depressed for 3 days when their hamster died when they were 8 yo know exactly how to "cure" me. One person pushed me the "everything is possible" and took Stephen Hawkings as an example. He fucking meant I was a failure and not trying hard enough unless I became a world-famous successful scientist!! Sorry, I ain't ever gonna have a 9-5 work, if any work at all, and that's just how it is. Everything is not possible, and I'm completely fine with that, as long as some thing are possible.

  35. "I never thought I'd ever fantasize about cleaning my room before."

    Oh, hard same.

    Thank you for having made all of these and making new ones. This is stuff that is so difficult to talk about but extremely helpful to hear someone else saying. Every time you say something that's in my life too and you have a reaction even anywhere near similar to my own it is extremely validating and I appreciate it.

    Thank you for your words.

  36. Its called pain meds but attorny genral says nobody can have that kind of medican ever and he has taken away from the most people that need it for any quality of life they got our pain meds away from us still the herion overdoses continue to rise we are the only people they can win the war on drugs over us pain suffers they cant keep it off the streets cant even keep it out of the prisons since we dont have a voice were easy to win over cronic pain people yup goverment should be very proud to win that war on drugs i am going into heart failure denied even my blood pressure meds now

  37. I have Autism, ADHD, hypothyroidism, and major depression. My energy comes and goes. Now because of my ADHD, my brain is very hyperactive and I’d think I could do so many things at once, but my body is lags far behind. I can’t do strenuous work for long hours nor can I do a lot of traveling (unless I had plenty to eat and I’m only going to places I want to visit). It even takes lots of energy to get out of bed, write, or talk. Not to mention that any sort of changes (unwarranted) can throw me off and cause me to shutdown. But because I’m not physically disabled, people doubt my disability and would try to call me lazy. Plus when I have my panic attacks or meltdowns, I’d get stared at or ridiculed. Luckily, I was able to receive SSI but I shouldn’t have waited so long.

  38. #1 _ pain fluctuates. It's always there. It can be okay then go through the roof. _ #2 _ the holidays and familly gatherings is a time for relaxing, not having repetitive and/or revealing and upsetting discussions about the damn illness _ #3 _ unsollicitated advice (easy fixes, etc. ) are frustrating and/or unvalidating. ''push harder '' – '' Try harder '' – '' Try yoga / Green tea / meditation '' _ #4 _ flare ups are the worst and need to be avoided at all cost. And yes, that sucks. _ #5 _ looks are misleading : laughing smiling speaking doesn't mean no pain. _ #6 _ mood swings are a consequence _ #7 _ how to be helpful – acknowledgement – validation – ASK me what i would like, what i would need in the present moment – and how you can be supportive in the future if you feel so inclined. (If you can give some advice, if i want to talk about how i feel, etc.) _ THANK YOU this is so helpful !!! <333

  39. Hearing you speak, I feel lucky that I'm not overweight. I can't imagine how devastating it is for people to blame all your problems on your weight. I'm so sorry that happens to you.

  40. You know what’s fun? When you ARE on a special diet that is actually helping, and people try to push holiday foods on you. “Oh, go on! It won’t do you any harm!” Yes. Yes it will. I’m not trying to insult your cooking or dismiss the effort you put into making your special whatever. I’m trying to keep myself as well as I can. Thanks.

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