Letter to Normals from a Person with Chronic Pain & The Spoon Theory

Letter to Normals from a Person with Chronic Pain & The Spoon Theory

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TracyLynne
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Letter to Normals from a Person with Chronic Pain & The Spoon Theory

This was quite popular on the old website, and I see someone requested it, so thought I'd reprint it again.

This is an adaptation of a piece written by Bek Oberin.

A Letter to Normals from a Person With Chronic Pain

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 work, 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 doctors 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 I'm 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, as is the case with herbal remedies. 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, the cooking or the 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 asked a lot from you, and I do thank you for listening. It really does mean a lot.

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manalerie
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goodness

Can I send this out in mass emails?

davidkarle (not verified)
Title: Member
God bless you

Is this really healthy though? Expecting people who don't suffer what we do to understand? Looking for their sympathy? I gave up on that a long time ago. Truth is, there are no words or ways to communicate how chronic pain truly feels. I think changing our perspective so we are thanking God for the fact that they DON'T experience what we do is the way we heal. Of course, any opportunity to rest your head on the shoulder of one who walks in your same shoes is always a blessing as well.

As for the "normals" however. Let's just thank God for their lives and the normalcy they have while they still have it.

jewels (not verified)
Title: Member
So Perfect!

This reminded me of something that happened when I was still working. Well, actually it remined me of a lot of things but I want to share this one in particular.

One of my coworkers was always "selling" something to make an extra buck. It was always some kind of crap that I would never want in my house or makeup that I would never buy. At one point she got into selling jewelry that "healed", it was made out of copper and steel. She told me that I needed to buy a bracelet at the cost of $100.00, and I want to mention that it was very ugly! Expensive and ugly! I refused. The next thing I know, she's telling everyone else that I work with that if I was "really" in pain that I would buy it so I must be faking. I was so offended! But then, my coworkers were very good at offending me all of the time, so this shouldn't have surprised me. Oh yes, everyone judge me because I do "NOT" beleive in healing crystals, bracelets, or any of that other crap that people try and shove down our throats just to make a buck. But to actually be judged by others for this? Simply amazing! Yes, let's all give up our doctors and buy jewelry from her. Otherwise, there must not be anything wrong with us!

As to this letter, I would love a copy of it. Is there any way that I could get one? With the addition of a few more things, this is the perfect way to try and explain my life.
Thank You, =D>
Jewels

agriman (not verified)
Title: Member
Copy & Paste

Copy & Paste

tinkster42 (not verified)
Title: Member
awesome

That was SO good and captured how I feel practically to a T. I would imagine how alot of us feel.
I know my family does not mean to be "toxic" sometimes with their words but sometimes it happens. Often someone in my extended family will ask "how are you today, how is your back/legs". Its not that I don't know its just that I dont want to sum it up each and everyday for them. I don't know if that makes any sense whatsoever.
I have tried a new medication called Pamelor, it is helping. I am not sure how much it actually helps the chronic pain but it has been wonderful for the bit of depression I will find myself in. Chronic pain stinks.
Thanks for letting me share.

Lori

TracyLynne
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davidkarle

I always felt this letter sounded kind of "whiny", but I guess my point is that it really does lay it on the line and very bluntly! Eyebrow I think there are people who will really make an effort to try and understand what we go through, but there are others who will ALWAYS doubt because they haven't walked in our shoes (as you said, lucky for them!!).

I found a great way to share this info in another way, and that was by doing a presentation to a class of 2nd year nursing students....it really brought to light what living with chronic pain is like. I posted it under "Good News" and it's called "my debut as a chronic pain spokesperson". It felt SO good to be able to educate the up and coming nurses, even if I only affected 20 or 25 of them; with any luck, they will share their knowledge and carry on the tradition of treating "us" with respect and dignity.

Thanks for your input, everyone; I can't take credit for it, as I said, but it's an interesting thing to share!!

Tracy

colbyJ
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the "normals" in my life are in denial

Another member who was in gourmet to support her son pointed me in the direction of this post. I have not been so grateful for something I read since my surgery failed and discovering say lidocaine patches made a huge improvement in my ability to even consider hanging on.

It boggles my mind that after a variety of rehab doctors, surgeons, pain docs, and my good old MD have all pointed out how my neo looks Luke disc is still herniated but it is actually scar tissue that they more frequently verbally abuse me saying I don't exercise, eat right even while I starve myself to avoid more weight gain since that would mean worse pain. My sister recently accused me of being a drug addict, as my mom has also done. My family including me all have tendencies for addiction. Yet I do not drink and have been on same dose. For over two years. I even got and opinion about my dose which is 30mg twice a. Day of morphine sulfate ie time release and three breakthrough percocet daily. If I abused my meds, how could I get up and work without withdrawel
?

Facts are. I know I need meds to survive and am appalled loved ones would believe I spent 3 years crying, er visits, epidurals, facet shots, ablation, steroids, a ton of non narcotic meds like anti convulsants and anti psychotics for pills. I lost. Life savings, top salary ever, moved in with mom, seen excellent therapist who teaches at Penn, no dating - zero guys right at age I'm supposed to be married 5 years ago, forget sex since I have l5s1 and can't take a cat on my lap.

My family lives well, very well. My sister never visited me not even while in psych ward from SI thoughts after steroids side effects. She never called once after painful procedures and constantly complains about her looks or a bad date joking we should both give up, meanwhile I had about 4 good months with no depression as I focus on building my.firm being SO SO grateful I found a way to earn again after 3 years asking for free toilet paper.

But even af5er 3 years no one treats me like the handicapped person I am, in fact they ignore me when I'm in acute pain and should have someone to comfort me. They criticize my weight and I'm only about 30lbs over, they reprimand me when I get flare UPS saying I overdid it when they have NO idea it could have been from shampooing my hair, I never know what little thing could. setvitboff.

They don't know that things like proper hygiene lime cleaning oneself on the loo is so painful I drink as little as possible. Or that when I dream I'm painfree, and so waking to my sickly body that's suffers for first 1-2 hours EACH AND EVERY MORNING OF MY LIFE I MUST FORCE MYSELF TO TRY, BECAUSE THERE ARE MOMENTS I ENJOY LIFE STILL.

I too hate being asked by friwnds and pretend life is a play and I'm not hurt, it seems to work to get me to forget pain if u will while living with it.

How can I try to combat their judgements about how messy I am, that I wear ugly shoes cause. I can't bear others, have them take me seriously when I do mention my pain, get them to respect that I am not lazy..I am doing all I can. They have damaged my se/f esteem and made me guilt ridden over paying for my meds while driving new BMW?

All I want is some attempt to have empathy, to offer minimal care when I'm bedridden, and maybe even a kind word that I'm working twice as hard to do my job putting in weekends to catch up when I needed breaks during work hours.

I must mention my circle of friends... that if not for them i could not be where I am today, I thank god daily for them. But somehow your mom, dad, and sister seem to tear me down even though they love me.

Sorry for huge rant, but I've been down. Since learning RFA annually is my only option for relief. Thank goodness I found this site...every night I find understanding support from smartphone in bed. Wishing u all well. Colby

dilauro
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Colby

I just read your post..
It sounds like you want help, but I am not sure. You've talked about some problems, but I am not sure how and if they get resolved.

We try to do what we can to help others here. Perhaps, its just allowing you to say whats on your mind and for us to listen.

Normally, I read about specific conditions, MRI reports, potential surgeries,etc. but thats not what I got from your post.

I hope we can help you.

Ron DiLauro Spine-Health System Moderator
Dont laugh at me

John
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Ongoing......

Tracy,
For the most part we engender normal’s to understand our plight of which many are incapable of understanding. I know I have pain and do not have to live vicariously through them for any recognition; we make the assumption that they were normal in the fist place and some are incapable of understanding any of our needs even when we have told them.

We have to live within this society and making exclusions isolates us, the people who have helped me most were those who listened and were compassionate to my circumstance. None of them needed to have pain to grasp the overall difficulties; I am sure normals would have a letter to CP patients.

My son is physically disabled which is visible to all, and even with that knowledge as a disabled person he is stigmatised and viewed unequally, what chance do we have if our plight goes unseen for being treated as we would like. Those who have the inability of supporting us will not be any more eager having read our letter, all the words used in how we should be support are correct and each enclave has its own individual way in how they would prefer to be supported and even the words used.

Coby is correct in assuming that the problem is with them than us, the notion of disability itself carries some inferiority perception and we fall into that category primed and ready for uncompassionate treatment and pity. Our true friends have no need of this letter, they have adapted and listened.

We all know that those who would deny us that grace and recognition could not live as us for any period, my heart knows I am above such hierarchy, those assumptions about my capability are wrong, measured from misconception and the need for others to feel superior.

In being assertive we only reiterate our daily struggle within that is something we are trying to hide in the first place, I have no problem is wanting to be treated equally and long may it improve, are we not in denial that everyone will not get it and in trying to chase that objective we too contribution to our own demise. Perhaps the hurt is in those who are close to us do not help that we surmise should understand more, I have no expectation of the passing stranger, even some partners do not fully understand, it is not easy.

For me disability has only improved the words used, practical every day living and who I am perceived as in some way inferior, would those who tread us disrespectfully do so if they had someone in the family unit of equal need, it does make you think.

We have to start somewhere and I do applaud any attempt to make the circumstance of those living this existence understood more favourably.

Take care John…

colbyJ
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i would like help thank you

Ron, I know my rant was all over the place. What I am really struggling with currently is my family treating me badly and not offering enough support when I am in acute pain. My sister in particular has nothing to do with me and we used to be close. When I as for. A ride after getting injections they seem like they think it is low priority but I only resort to shots when I can no longer function. I've been very brave and done all I can for myself. I've been in therapt the whole three years and its been a lifesaver literally. But I would be so much better off if when I need someone I could count on my dad or sister or mom. It's all been too much. for them I guess, but my shrink said they are pretty awful and he is someone whos seen it all. I think I must be in the highest
est level of pain someone can be in and still work somtimes. I only say that because I would expect to hear more people sound desperate like me...I'm embarrassed but can't keep it in or ill explode.

Most famlies are probably supportive but I wonder if there are others like me who have been able to get accross how dire my situation is. There are many times I wonder why I work so hard just to survive, unable to see friends or much.of anything other then my job which is the one great thing I have going.

Being called an addict by my sister and mom ( she said our of anger and knows I need meds to work or just stand being in my b9dy) makes me angry as heck! I was so depressed for two years that now I'm confident I'm handicapped not crazy

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