Skip to main content

Things people should know about someone with Chronic Pain and Illness: The do's and don'ts.

People mean well with the words they say or the actions they do when dealing with someone who has a chronic illness and pain.  I don’t believe anyone intentionally means the following remarks to be hurtful or annoying, or just ignorant.  However, to really try and understand how chronic pain works on a day to day basis then continue reading.  It’s to give people a better understanding of what is helpful and what is not.  Don’t be offended if you’ve done some of these things either.  Don’t be offended by my sarcastic remarks either.  I just want you to be aware. I’ve studied around on lists other people have made about chronic pain and what is helpful and what isn’t.  It wasn’t surprising when I found that my list was the same or very similar as others who deal with chronic pain. 
-          You don’t look sick- Just because I don’t look sick doesn’t mean that I’m not.  Some days there is a little more energy to put time and effort into getting ready for the day.  With chronic pain you learn very quickly how to fake being well. 
-          Everybody gets tired- Your type of tired and my type tired are very different.  I’m tired just from lack of sleep.  I’m tired from walking from my bedroom to the bathroom. I’m tired after taking a shower.  I’m tired from just sitting there.  Pain takes a lot out of a person.  It exerts all of your energy. 
-          You seem depressed- Well I have a debilitating disease, chronic pain.  There are more bad days than good.  Of course some days I will feel a little down, but that does not mean I suffer from depression, nor does it mean that you have a clue as to what is actually being felt.  It does not help to hear those words.
-          You’re just having a bad day- again, similar to the depression comment, unless you feel the exact chronic pain, please don’t tell me what kind of day I’m having. 
-          I wish I didn’t have to work- you should be so lucky that you have the ability to still work.  I’ve got no work, no money, and a plethora of medical bills.  It would feel so normal to be able to work.
-          You need to get out more- Please understand how difficult it is to move.  Some days are a little easier than others but sometimes going out and doing something makes the pain worse.  If you don’t feel it right away you certainly pay for it the next day. 
-          Doing one small activity will do you some good-  Even small activities like taking a drive can mean the recovery time of a day to weeks. 
-          You’d feel better if you got some exercise- If my body would allow me to move, exercise wouldn’t be a problem.  It’s easy to say how much better one feels after they exercise etc.  But those people are already thin and don’t cry at the thought of trying to get out of bed because it hurts too much. Also, if it helped I would be doing it.
-          It’s all in your head- Feel the pain that I’m feeling every day and then tell me if it’s all in your head. Believe me, it’s a very real pain and no amount of talking to myself to train my brain to not feel the pain is going to work. 
-          There are people worse off than you- of course there is, but at the moment, I have it worse than you.  And it doesn’t take away how much of your life is gone due to chronic pain and illness.
-          Just be positive or more positive- Some days it’s OK to have a bad day.  I’m always positive but the world is not ending if I have one day where I don’t think the sun is shining. 
-          You seem fine- Once again, I’m really good at faking being well.  I want to have as much of a normal life as possible.  So I will pretend to the max to just seem “fine”.
-          I wish I had time to take a nap- A nap consists of closing your eyes and maybe for 5 min you can feel a little relaxed enough before the pain attacks even harder and wakes you from your so called slumber.  I’m lucky if I can get a nap in.  But let it be known, it makes no difference if I sleep through the night or take naps or don’t sleep at all.  I’m still tired.
-          That must be so nice to just lay around all day- Maybe it’s nice to lay around all day when you have a bad cold or the flu.  But when you have a chronic illness, all you want is to be able to go out and do things. Laying down is just something you have to do to keep you going through the day.  It’s exhausting to have to lay down all day because your body won’t allow for anything else.
-          Aren’t you feeling better yet? I’m sorry my recovery isn’t on your time schedule.  Is it annoying to always be sick and in pain? Preaching to the choir here.  If my body listened to anything I had to say, then trust me, I wouldn’t be sick anymore.
-          You’re taking too much medicine- you have no idea the amount of pain that goes on.  You don’t know what is needed and what is not.  Until you do, please don’t state your opinion on medicine  You take what you need to survive the day without having to go to the hospital.
-          You need to change your diet- OK, because I haven’t tried that before.  If it worked, I would be doing it.  But it doesn’t. 
-          Losing weight might help- Most of the medication to help with the chronic pain and illness make you gain weight.  And once again, if that was the cure all, it would be done.  But it goes back to the exercise comment as well.  It’s a miracle if I can get showered, style my hair, and get dressed without needing a break in between to rest.
-          Are you trying hard enough? - No, I enjoy being in pain and laying around all day.  I try every day.  And just when I think I can’t push any more, I push.  I even push when I know it will set me back because I want to show as much normalcy as possible.
-          You sleep too much- There are few days where it is possible to sleep.  So please, let me sleep as much as I want.  Also know, that no amount of sleep is going to make me feel less tired. 
-          You’re just stressed- My body is in super attack mode.  But that is not the same stress as a normal person would have with a hard day at work or studying for an exam.  If it were that easy, there would be no problem.
-          Oh I get that too- Actually you don’t. Unless you have chronic pain and illness you can’t possibly understand.  A cold or a bad flu isn’t the same.  A broken bone isn’t the same thing.  But I am sorry if you’re not feeling well. Because I do understand what it’s like to be sick.
-          My friend’s cousin took this medicine and it cured her. You should try it- Believe me, I research, I try things.  If there was some magical cure I would be taking it. But thank you for thinking of me. Please don’t be offended when I decline to try it.
-          Don’t point out our bad moods- It isn’t helpful to hear that “you’re in a bad mood” etc.  It doesn’t make the situation better so please just don’t say anything.
-          Don’t tell us how we are feeling- Please don’t attempt to describe how I’m feeling. If you’re right on your assumption, I don’t want to hear it.  If you’re wrong then it tells me how much you really just don’t understand what I’m going through.
-          At least you’re not dying from it like cancer- I honestly wish I had cancer. Then I would know what I’m fighting and how to fight it.  I may not be dying at a faster rate like someone with cancer, but chronic pain is torture. It’s a slow, torturous death.  Eventually the body will start shutting down with the amount of stress it has gone through. It may take 50 years but it still leaves you without a life.  Especially when it’s during the prime of your life.  And sometimes you do tell yourself “I’m dying” with the amount of pain that is going on.  (That does not mean I’m suicidal either).  

Most of the time plans are made on a day to day basis.  If I have to cancel please don’t be upset.  It’s that my body won’t allow it.  Sometimes I’ll have to cancel 5 minutes before the event.  I wish that wouldn’t be the case, but I have no control with my chronic pain.

If I turn down an invite please don’t stop inviting me to things.  It’s nice to know I’m wanted even if you know I’ll say no.  You never know when you will ask on a day or a moment that seems like I could go and feel OK enough.

If I do make it out to an activity, it doesn’t mean that I’m suddenly feeling better. It just means that I’m trying my best to be social and feel normal.

Understand that I love visitors but I don’t want to talk.  I want to listen.  So that may be boring but have patience. It takes a lot of energy to talk.  Sometimes, I don’t want to exert that energy.  Even if you are the most amazing person ever.

On that note, please don’t speak for me either.  My brain isn’t dead.  Sometimes I just don’t want to talk about what is going on.  Sometimes I do.  But let me decide what info to divulge and only speak for me if you’ve been asked that one time.

Sometimes it’s hard to hear the wonderful adventures you’ve been having.  I envy that you get to go out live and I get to sit on a couch all day.  So If I seem not interested, it’s just because I feel sad that I couldn’t join in on the fun.

I’m in pain all the time. My tolerance for people lowers.  So I can’t handle weird.  I can’t handle selfish, or fake people.  Just understand that.

I don’t like to think or make decisions.  If you ask me what I want, I honestly don’t know. I don’t want to think about it.  I’d rather you list ideas and then let me pick from there. 

Sometimes, I just want you to come over and watch movies with me.  No talking, no nothing.  Just having the company makes a world of difference. 

Mostly, I just want to know that you love me and even though you can’t take the pain away, knowing that you’ll be there for whatever I need is all that matters.  I appreciate all the help that is given.  Even if it’s not helpful, I know it’s out of love.  There is no way you will ever 100 percent understand what I’m going through, but I need to know that you will try. 

I believe that one day, there will be a cure. One day no one will ever have to feel physical pain.  That day may happen long after I’m dead. 100 years from now. Or it may come in a year or two.  Either way, I believe it will happen.  So I will keep fighting and trying to live a happy normal life as possible.  Just be okay with it if it’s not the same as yours.  


Popular posts from this blog

I'm still here. Struggling, but surviving

It's been a little bit of a bumpy road the last bit.  There are days where I feel somewhat okay.  Well enough to at least go to the store or to a movie, and others (which are more frequent) where it is all I can do to just get out of bed.  The pain in my ribs gets so bad.  If that weren't enough, I've been having terrible migraines in the back of my head.  My right arm is still giving me trouble.  Most days it's so weak, I can barely hold a plate in that hand.  If I'm honest, it terrifies me. I don't know what that means.  Is the neuropathy spreading? Is something else going on? My head just spins. My doctor ended physical therapy even though I'm still using my walker.  I go swimming twice a month as my physical therapy.  It feels so nice to be in the water and not feel the pressure of pain.  But I can only handle it for about an hour and then I've completely exhausted myself. Thank you friends who have taken me swimming by the way.  It's not very g…

People's Ignorance

With my health being in the state it’s at I’ve come to notice the ignorance of so many people and places. 
On the days that I do venture out, I use my handicap pass for parking.  I’ve noticed the extreme limited amount of handicap parking spaces.  At the University Mall, with all its parking, there are only 4 every few rows on the south side.  Which, I’ll admit, before I really needed use of the space I never cared nor wondered if there were enough handicap parking spaces wherever I went. 
One day, I decided to “walk” around the mall for a minute.  I had just been to the movies next door.  A really sweet older man offered to help me down the few steps from the theater room.  Not knowing that you can’t touch my left side, that I had just fallen down the stairs the week before, and that stairs in general are painful.  He sort of just dragged me down them roughly.  Not helpful, but he didn’t know.  That incident had already made things tough and the pain and exhaustion was setting in.  It…

Life just sucks sometimes: A long and painful update.

It's been a while.  A lot has been going on. I was randomly chosen for a Tax Audit for the year 2014. The guy who came, said he tried to get me out of it, but you have to be terminal to avoid the IRS. The type of audit I had, was a survey audit for Congress. Some weird questions were asked.  After the visit, I was asked to get some information from my work that needed answered.  That seemed like a big chore.  Luckily, after the guy who came to audit me, got back to his office, he called me.  He said he spoke to his Manager and they decided to drop the case.  I didn't need to provide any other info and a letter would be sent stating the audit was closed and I was in the clear.  I just found it so interesting with the odds of me being selected for an audit, while being as sick as I am.  I guess  you could say that was the most interesting thing that has happened to me in a while. 

Health wise, I'm currently on Sulfasalazine to treat the actual "disease". It's no…