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Dealing with explaining your condition

hawksbillhhawksbill Posts: 12
edited 06/11/2012 - 9:00 AM in Chronic Pain
I have yet to come across a thread addressing this (feel free to link to one if it's there) but it's something I've been having to deal with frequently, especially lately.

Spinal conditions, as I've learned, are confusing and hard to explain to someone who knows nothing...

How do you guys handle explaining your condition to others when necessary?

My personal experience is from being fairly young, 23, and working full time at a fairly physical retail job where my customers are of the older (45+) demographic. There are times when I'm trying to assist my customers and am suddenly plagued by an intense muscle spasm or sudden excruciating pain somewhere. When I cringe or groan in response to it, I get a lot of weird looks. It sometimes gets to the point of where I actually have to stop everything I'm doing to go sit down and wait it out...leaving my customer unassisted and confused.

I find it very difficult, especially in the midst of such an episode, to try and explain whats going on. I usually chalk it up to something they might understand like "sorry, muscle spasms" and try to continue as normal the best I can. I wear my corset lumbar brace at work, which really restricts my ability to do certain things with ease, which doesn't help matters.

There are a few of my regulars that are well aware of my issues and are very accommodating. Though there are some that like to make jokes about it, which is pretty self-defeating for someone that already suffered from depression and anxiety before the pain and neuro symptoms.

The usual is people older than I that blow it off and tell me "you're too young to be in pain" or "oh, you don't know what real pain is like- wait until your my age" or "you don't look like you're in pain" or some sarcastic remark when I have to tell them I can't lift something for them. Now I understand, pain gets worse with age, but I feel like it's inappropriate to judge someone else's condition based on age, let alone make (what I feel) are sarcastic, dismissing comments towards it.

I suffer from a fair amount of conditions that aren't visible on the outside and find it very frustrating to try and explain why I'm tired, out of breath, frustrated, or down to someone who doesn't understand. So I guess my question is how do you guys deal with having issues that people can't "see"?


  • I really don't feel that you need to give anyone an extensive explanation of your medical conditions; specially your customers, to me all you would need to say is; "I'm sorry muscle spasm" or " Got a kink on my back" or something like that, because really, they are there as customers to pick up an item, and you don't owe them a long explanation of what's going on.

    When I started in this pain journey, I found out that not everyone really want to hear our lives/pain stories when they ask; "how are you?", is just a salutation, and we should treat it as that. I know people that when I asked them; "how are you?", they give me a long story about the sciatica, the diabetes, what the Doc said, etc.. and to tell you the truth, I feel their pain, because I am in pain, but all I was doing was saying hello...

    I made a commitment to only talk about my pain with those that really, truly care about me and how I am doing, so I only discuss my condition in lenght with; my mother, my sister's, a good friend that is also in chronic pain, witj several pain forums that I belonged to like "Spine Health", and finally my Doctor, that way I don't bore anyone with my life story, and I save myself some aggravation. I hope that this helps.

    Take Care,

  • There is a post called a letter to normal. Maybe that helps. But Iunderstand what intonsofpain said. People get drained with our pain. I wish I would have talk less about my pain... now that I really feel worst everybody is tired of me. I realized that is like intonsofpain said. Also is better to think of yourself a ot more things that someone in pain. Trust me I know is difficult.
  • wright it down .do a typical 24 hours and include everything .i found it works very well .i had a situation where i needed to convey important information also very embarrassing to my consultant and i was upset wondering how can i tell this person this situation .so i wrote it down ..no problems he understood and the appropriate action was taken .so you may want to think about writing your pain and problems down and just saying to your doctor please read this ..it worked for me
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • I am 29 and have been dealing with various symptoms over the past 10+ years. I can totally relate...it drives me crazy when people say I am too young to feel like this or "wait until you are my age." When people say those comments to me, I just say, "oh, I already know...as I am 29 living in the body of an 89-year old." I have AS, DDD, WPW (a heart condition), spontaneous retinal tears, high blood pressure, GERD, thyroid disease, eczema, and the list goes on. So yeah, my 99-year old grandfather can probably run circles around me.

    Just try not to let people like that get the best of you. Their ignorance is truly not intentional. If they really knew you and the pain you live in, I am sure they would not make those types of comments.
  • I was 29 when i was already having back issues, I felt i had to hide the back pain many times to get many jobs from customers as i was in construction and ran my own business,

    I never wanted them to think how this dude going to work for me when he looks like he is falling apart, I had to time my estimates to where i was able to compose myself as not being in pain and could not wait to write up the job and get back to my truck,

    Of course during the job if customer hapened to be home and noticed me moaning and strugling i of course played it off as if i just over did it the other day on the last job,

    As i had people working with me if i could not make it through the day my people knew to cover for me and all customer ever knew is i had an estimate to go to, Thats all the.customer needs to know for he or she is not my momma to share my personal business with,

    If i was not self employed i would not been able to work for anyone the regular 40 hour weeks as they would of needed me to,

    I did this for at least 20 years untill i could not do it any more, Then when i finaly had surgery thats all she wrote because pain became worse when surgery failed,

    So if its a person you only see once in a while such as a customer they dont need to know your medical history and need not explain anything other then. Ye i pulled my back out is all,

    Co workers i am sure already know so some more info could be shared with them that you seen a dr and either surgery is too much risk or they cant do anything more,
    Because if they dont see anything and dont believe its serious then usualy they will get sarcastic assuming some yes do play the hurt back card to get out of work,

    I assume you have seen a specialist for the back condition correct?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Thank you for your feedback =)

    I definitely don't want to bore people with my story at work, I am usually the one getting bored with too many TMI situations...but I was wondering what are some more quick, decent comments to make for people to get the idea that you're not feeling 100%. Muscle spasms either relate to them and they offer a quick reply of empathy, or they look at me as if I just read them Shakespeare. Another commenter suggested "I threw my back out," and I think that one is more universally understandable.
  • That was definitely an appropriate post to read, I struggle with my significant other and friends not understanding too and it defined other things I have been thinking about. =)
  • Thank you, you story sounds like what mine will be like in a few short years. I'm the workhorse of my job and I try to hide the discomfort as much as I can, but unfortunately I work under 4 people so they do know that something is going on and that I'm seeing a doctor about it.

    I did post a little while ago my story, as I'm new to this forum...but have not received an official diagnosis yet, hence the lack of descriptive signature. (Something about having to request it be typed up and sent to you if it was not explained clearly enough by the doctor) I will say though that things have gotten worse since I wrote that. The pain has been increasing, and along with it came the frustration with limitations, depression, and overall crabbiness.


    But what scares me about your comment is the fact you pushed off surgery and had it fail once it finally got so bad, as I was recommended for surgery. I have not been through the round of conservative treatment yet (except for my lumbar brace) but surgery was all my neurosurgeon focused on during my visit. That's why I'm trying to seek out information here. I need to see him again after they send me the official diagnosis too.
  • Its not that i was pushing off surgery in my case, All those years mri never shown rhe disc leaking. Took years before finaly a pain specialist did a discogram that finaly reveiled disc was leaking on to the nerve,

    After years of suffering after finding this out and being told about the artificial disc surgery clinical trial i was in surgery within weeks thinking finaly the pain will be resolved and back to work i go, i had a great out look as i came out if surgery and even went back to run a job or 2 untill i realised nerve flare up from the nerve damage was not geting beter it was geting worse once i totaly healed,

    If your original dr visit you mention was where dr was all about surgery what surgery was he wanting to do on you?

    If he was ready to offer surgery then he had to have a diagnosis for doing surgery,

    If 1 dr offers surgery all you can do is get 2 nd opinion and if another dr agrees surgery is needed and no reason to even do injection along with pt then you know you are a surgery candidate and might not be worth puting it off,

    Many people get the surgery and are back to work so i am just not 1 of them but i took a risk with something that was new and it was still in a clinical trial phase,

    Worst thing anyone can do is. Not do anything about it, I had alternative treatment for the 20 years before the surgery, You name it i had it,

    Dont put off untill tomorow what you can do today is what they say, Iam not sure who is they but sounds good eh? Lol

    Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Oops. Ok sorry just read your link to your original post,

    Your condition is spondy so i understand the reason for the back brace, So fusion is the procedure dr was recomending, Hopefuly others who had or have same condition can give ya info on how long they were able to manage without surgery,

    You being young has nothing to do with people not understanding many are born with spinal conditions and if i remember correctly this is 1 of those cases,

    No diferent then friend of mine had a baby and she now already has scoliosis and already poor litle girl had multiple surgeries to keep her spine to where as she gets older her spine stays stable, She only like around 7 or 8 years old now,

    So nobody can say you are too young because many of us are born with some of these conditions and some of us it just comes with age or the abuse on our body,

    Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I just received my "diagnostic studies" paperwork in the mail last night, and this is what it said:

    "Lumbar spine films show at least 3 mm of slip of S1 anterior to L5. There is spondylosis here.

    Flexion reveals C2 anterior to C3 with 1.9 mm of slippage, C3 anterior to C4 with 2.3 mm of slippage, C4 anterior to C5 with 2.5 mm of slippage, C5 anterior to C6 with 2.3 mm of slippage, and C6 anterior to C7 with 2.5 mm of slippage and C7 bilateral radiculopathy. With extension, C3 is slightly posterior to C4. C6 is still slightly anterior to C7, but less so in the flexed position.

    The patient has issues here that can be fixed with the flexible fixation system. The fusion, I would only hazard to do at one level, before additional problems develop, especially in the neck."

    This doesn't mention spondylolisthesis, but as I understand it, Grade I isthmic spondy is at 3-14 mm...so do you think that would be safe to assume for my L5/S1? Also, my research has told me that you should never go into surgery without your surgeon being able to pinpoint exactly what is causing the pain, so does that translate into another round of tests since he doesn't seem to mention any real specifics?

    Ugh, this is all so confusing =(
  • >:D< Hi Niki,
    First welcome to sh, sorry just read your first post. Sorry I didn't respond. It's great of this doc to see you free of charge. However you need to bring someone with you. It is so very overwhelming to hear a doctor who say surgery, and especially a doc you just met.
    We are can't read mri's (all tho I've had so many i should be able to) and we are not medical professionals to give you what all of this means.
    I can say from my own experience seems you need to have a lot more appts. with this doc. before going into the state of mind of surgery.
    I understand this doc is free and it seems your only option. It would be wise to find another doc and get someone thats going to sit down and take the time and explain (in lay terms)all the results with you.
    So I see you said you have the written reports do you have all the discs/films of mri and xrays, you can get copies of these at the place you had them done. free of charge.
    find a teaching hospital in your area or find another doc via that clinic.
    Any good surgeon is going to take time and want you to get a second opinion.
    Don't get your self worked up.
    Get a notebook and keep copies of all test and all doc visits. Write all your questions down and leave spot for the answers. Bring this with you and bring someone with you to the next appt.
    Yes we all are different and some ppl can have a lot going on and not feel so much pain, were others can have a small bulge and feel huge pain.
    So take all your reports and get into see another doc.
    It's great to do research on what they give you a diagnosis of, but the doc needs to sit down with you and keep explaining till you fully get it, or another doc. Till you understand whats going on clearly stay away from surgery.
    If you can go on light duty at work, you don't want to injure yourself worse.
    keep us posted >:D<
    oh and the comments I would just say ya pulled something, it is so hard for ppl to get it when they don't see a broken limb.
    I am 52(young)and omg if one more person tells me I'm too young to have O2 on or be in pain....going lift up my o2 tank and belt them with it....hmm see if they feel the pain ok jk its very annoying. trust me don't bother explaining most won't get it at all and most don't care to know. well except us we are always here and post as long as you like.. (as I do)
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
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