Keeping a job with chronic pain

Hey Em-Ja,

I found this years ago and have printed it out and shown a lot of people so as they can understand chronic pain so give it a whirl.

Subscribe
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
**********************************
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
AUTHOR UNKNOWN

Hey Johnno, thanks I appreciate it.

Those two pieces of writing are great, they will definitely help me try and explain things. I'll keep them on hand to show people if I need in the future. I wish I could credit "Author Unknown" - they are really good! 🙂

Hey Emily
I know with myself I had to completely stop work and will probably never return, but with your situation and not knowing what you actually do, I would find out my rights with regards to them firing you or forcing you to leave on the grounds of your not being there due to cp. I know it's stressful and your worried about what your employers are going to do, so if you had this information it might help.

Good Luck

Hi dancerdolphin, thanks for your advice. That's a great idea looking into rights and leaving on the grounds of chronic pain. It's a retail job, not my intended career but nonetheless a job for the time being! 🙂

Thanks for your advice, will keep you updated.

hi Emily,

I have been working full time with my chronic pain for past 10yrs or so... until April this year, when things just became out of control and my specialist is suggesting I cease work all together

I think if you have a good employer, who can be understanding and flexible around what you can and cant do, esp around flare ups etc, working part time when needed etc.. and having good gp who will prescribe necessary medications as needed without making you feel bad or like a drug taker ....

I am struggling at moment with stopping work, and having issues with accessing TPD through superannunation, and having Centrelink decline me for dsp due partners income being just over the income limits, and it is causing some real problems in our relationship, and putting our home at risk - we cant continue to pay the mortgage and will eventually use all the pre-paid components and face the what next option - but ... hopefully something will sort itself out by then...

good luck, I would suggest taking someone with you to your work meeting, and/or if you are in the union at work, a rep

Pam

I started to reduce my hours to be able to at least give me the opportunity to rest the body between days or shifts you could offer that option at least you are trying to remain a valuable employee when rested.

Johnno

Hi Pam, thanks for your reply and advice. Unfortunately no one is able to come with me (everyone works!) but i've done some research and legally they can't fire me unless i resign. So I think they will either make me a casual or make me resign on my own accord. It's a tricky situation at the moment because my meds haven't stablised, but I'm hoping they will be understanding. (Fingers crossed)

Thanks again for your advice and goodluck with your situation as well, i hope things sort themselves out 🙂

- Emily

Hi em-ja, i was in a similar position to you. Though my boss said he noticed i was struggling and asked me for a fit for work certificate. Well i never passed this medical and then my boss arranged a meeting for me, informing me he had spoken to HR. Well the next thing they tell me i am a work cover risk and was promptly " let go " .
Finacially i had to keep working, i have even lied to get other work but with the pain and spasms they always find out and thats the end of that. But i now see it was really a godsend and it was not helping me infact making me worse.
I have everything crossed for you so you can keep on working even if its just a few hours a week.
Harpbird

Hi harpbird, thanks for the message.i hope everything worked out for you. I had the meeting and they want to keep me and get me doing 2-3 hour shifts, so that is good. Bit nervous about how my body will respond but I hope I can work with them! Thanks again for your message 🙂

Thats great Em-ja, good news for you to keep your job. Fingers crossed its not too much for your body and you can keep working for as long as possible, its even better news for your sanity.

:cheer:
Harpbird

Hi Emily
That's great to hear hun. Much better than having to go through the other stuff if they fired you because of your CP. Good luck! I hope it goes well. 2-3 hours doesn't sound like a lot but it can feel like all day when you've got pain like us, so take it nice and slow and maybe sit down when you can (if you can) during your shift so that way your not feeling so bad.

Good luck again 🙂

Jacquie