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How to deal with lack of support

So it has taken me two years to get to the point of where I am with my diagnoses, because I never fit into the normal range of what was going on. I herniated my C5-C7 two years ago and now the discs have degenerated to the point where there is nothing left and my facet joints are damaged really bad as well. I was never in any type of accident or had any head tram and I am only 28 years old. My surgeon will be preforming a fusion from C5-C7 and will be taking the two bone graphs from my hip because he thinks my body will reject the bone substitutes since i have been reacting to ever medication I have been put on.

The Issue I am having is the lack of support I am getting from my husbands family. They just don't seam to understand what I am going through or even care. I am in pain 24/7 and I am lucky if my pain ever goes below an 8 now. I am still working to the best of my ability because I am an account manager and my customers are very important to me. I have learned to put a fake smile on my face and just tough it out to the best of my ability when i rather crawl into hole and not come out ever because the pain in my head is unbearable.

I really think the reason they don't understand is A) because they don't care.. I was told yesterday to stop walking around with my head up my ass and that the issues I am going through is not that big and B) Because physically i do not look sick because everything is internal. They rip on me for taking on pain meds...."why would you ever take those" "your going to be come addicted" "you don't need those" They never ask how I am feeling, or ask how this is affecting me mentally, or ever ask my husband how he is doing. We have only been married for three years and this is a lot to deal with as a young married couple.

What do or should I do? At this point I could care less if I ever see any of them again? I know I can not separate my husband from his family, but this is killing me.

I am not dealing with any of this very well at all.

Does anyone have any advice?



  • Where do I start!! I'm shaking my head here, first I'm sorry about the neck pain and understand everything thing your going through. When I was in your shoes my first time having neck pain my husband said " stop thinking about it" . I think I went to my bed and cried and had a huge fight. These people who are not helping you or not showing compassion I would avoid them. If they ask how you feel just say "I'm fine" and walk away. Disconnect yourself from their lives. You need help, you need love, you need moral support. Do take your prescribed pain medicine it was prescribed for a reason. My first surgeon told me when I was worried taking pain pills that if you are in pain you will not be addicted, if you take them when your not in pain you will be addicted. Allow your husband to be with his family with out you. If they make the comment you don't need the pills say "when did you get your medical degree"? Trust me these people will get there day when they need help and you can return the favor and treat them like they are treating you.

    Some tips to feel better wear a soft cervical collar, get some heat pain patches, soak in a hot tub. Massages help too.
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • I really hope your husband is sticking up for you through all of this. Let me first start by saying I never understood chronic pain or back pain until it happened to me. It has gotten a really bad rap due to people abusing drugs and using minor injuries to push for more severe diagnosis/treatment plans. I am 36, and my I have so many issues my lumbar spine is a mess, along with severe osteoarthritis. My docs have even spoken about disability, which I was waiting till after the spinal fusion I just had to make the complete decision to go through with it. I am going through this all alone...no husband, bf, significant other. My family lives out of state. When I hear stories like this, honestly I don't mind doing things completely by myself. Ignorance breeds ignorance. Until people understand what severe pain is on a day to day basis, they will never understand your life. That is why we are here....If it were me, I would choose not to discuss my issues or anything medical with them. If they start the conversation with you, politely tell them you aren't comfortable speaking to them about it. You need to keep moving forward...people like this will unfortunately drag you down, and you cant cut them out because they are your family. Keep your head up...feel free to PM me anytime. Do what you need to do to get through the day for yourself...don't explain yourself to anyone. Its none of their business....I cant say this enough...try and keep positive.
    Spine-Health Moderator 
    Ankylosing Spondylitis
    Bulging discs T12-L3
    Annular Tears with Disc Extrusion L4-S1
    Moderate Central Canal Stenosis
    Moderate Foraminal Stenosis
    Enlarged Facet Joints/Ligaments
    Spinal enthesopathy
    L4-L/5 PLIF with cages, rods, screws 2/15 

  • Your husband needs to be standing up for you. Their attitude is ridiculous and you don't need that stress. I don't know how it is for others but when I get stressed, my pain gets worse. I don't think anyone understood until I went to the neurologist and they told me what was wrong and then needed surgery fairly quickly. I think maybe distancing yourself from them will be better for your health. Your husband can explain it to them himself and take the time to stick up for you. In sickness and in health.....
    Tracie C
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    I am like jilly bean, I never really understood before my own injury how all consuming it is. All the time when I used to say my back is killing me they would reply I know what you mean my back went out an entire week last year. I don't take it personal anymore. I think like jilly said there is a stigma with back pain be it from abuse of meds or lawsuits, I don't know. I found it so very strange that I had suffered devastating back pain for years and when I developed thyroid cancer all these people that cared less about back were suddenly so concerned but for me I had no pain or issues from it, was a quick easy surgury nothing compared to back issues. But the compassion was so much greater for it. Made me a bit sad but cancer also evokes images and things for people when they hear it. No disrespect to the beast that is cancer but for me it was a non issue..
    I hope they eventually understand, bombarded them with information in meantime to just read and understand. Might help and I am sorry you have to go through that
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • BlessedMom74BBlessedMom74 Posts: 322
    edited 03/15/2015 - 11:16 AM
    Rstubbens, let me begin by saying you don't deserve any of that. I had to cut my relationship off with my own mother for similar reasons. After my mother told me that my husband was going to divorce me because he was probably sick of having a disabled wife, I told her I didn't ever want to hear from her again. Especially considering that I am a very functional person considering how much pain I am in. My husband and kids are very well taken care of.
    I have an idea for you, I had to keep a pain log for my neurosurgeon and I printed it out and had my husband read it. He was so amazed. He hugged me and said "you hide it so well, I can't believe you go through this every day and still do so much for all of us". Maybe you should do the same for your husband. It's hard for them to understand because we don't "look" like we are injured. There is no cast, no bruises,etc...... As far as your in laws, I would tell your husband that they are toxic to you right now. That you need to be surrounded my supportive , loving people. Not people who are making you feel worse. He can see them on his own without you. Or he can stand up for you and tell them to not treat you that way. Being in chronic pain is such a challenge on its own. We need all the support we can get. But I highly recommend you start a detailed pain journal that your husband can read so he can better understand what you go through every day. Only his thoughts matter, not your In-laws. It sucks to be surrounded by xxxx when we are in so much pain. Sending loving thoughts your way. Stay strong.
  • edited 03/16/2015 - 2:52 AM
    I just recently joined and my story still continues if you'd like to read mine "how did I get here" disaster after micro" and I say that not to make this about me but just late last night or early morning I reached out on here asking if I'm doing something wrong. I felt I wasn't getting responses to my posts and I was feeling alone and I'll be honest going through something like this even when you have someone you still feel alone. Jilly has been very kind I see she's replied on your forum here and its funny what you find out about others as you go along here its autononmic also posted on one of my posts and I just found out he had thyroid cancer as did I and the family was the same out pouring of concern, now I can't get to the store by myself noone calls...again not about me but to give you solice that your not alone. My husband for other reasons 28 years ago stuck up for me and we no longer communicate with his 4 sisters thats a novel there...but I will say in the end his mother had noone to take care of her because she didn't have a pot to xxxx in...funny...so she loved me in the end as if I were her daughter. Life has a strange way of how things happen. Can I tell you, I was only to be out 6 weeks...I went for surgery because i didn't want the baindaid of epidurals not covered under my insurance...and I have 3 kids so my husband works but I need to work to but I was exec assist and I mangaged 135 + individuals. I cried all the way to work and all the way home..I finally went with surgery...but my point is the worry of work does not help this we as women try to think of everything take care of everyone....is your job a full time job? what state are you in? you can PM if you'd like FMLA and short term disability. I would never have gotten better if I had not stopped working and had surgery I am disabled right now but thats another mess...But YOU come first...I don't recall if you said its your husband? Or just his family? Well what I want to say here they will edit...so you are no good to yourself or anyone else unless you take care of you first. Don't argue with your husband, I've had my share of that too because I maintain the house the kids the bills the every day stuff and the 2 1 and 1/2 old beabull pups we got. I don't think it hit him until I was on that operating table Ive had 3 c sections thyroid cancer surgery, hysterectomy, skin cancer surgery, but always bounce back im 5 4 125 and healthy....if you were to meet me you'd never know. I say I'm like the cover of a really poorly written novel but the artist who designed the cover...its beautiful! (not that I'm beautiful) but I think you get what I mean...please feel free to PM me I am here however you need.
    This can't be happening
  • try going through it with no significant other lol.
  • as I mentioned in my comment to help Rstubbens sometimes having someone is just the same as doing it alone. with me losing my job I have placed a lot of stress on my family...I'd almost choose doing it alone so this didn't affect my entire family.
    This can't be happening
  • Hope3HHope3 Posts: 751
    edited 03/16/2015 - 5:13 AM
    So sorry for all you are trying to deal with and like some
    said it is hard for others to see Chronic Pain. But you
    deserve to be treated right and not have that added stress
    from the family.
    I don't have the support of my better half and my family
    a lot because I tried to go on for years just handling it all
    which is part of who I am but now in the past few years
    I cannot do much of anything. Funny I thought when it
    got to this point everyone would step up but it did not happen
    that way. I think part of that is my fault I kept so much
    inside and pushed to do it all, so now they expect life
    to go on. I eliminated several people from my life cause
    of their get on with it attitude.
    They cannot see what you are dealing with but you sure
    don't have to tolerate that, it is easier said than done but
    you need to put yourself first. Stress is so damaging it
    just takes its toll. I hope your Husband will stand up for
    you and do his best to have them treat you right. We know there
    are those out there that will never get it unless they go through
    it, so distant yourself as much as you can.
    Once again that is a hard issue and I wish you the very best.
    Take care of yourself
  • SukhreSSukhre San Diego, CAPosts: 181
    Nerve pain is not visible. No one sees it. Even the loved ones may think its in your mind. I myself was unaware of the danger of my severely compressed nerve at c45-c56-c67. Most compassionate people may think your grim face is coming from anxieties or worries not the pain. I get a lot of compassion then a lot of "Oh he is walking ok" from the same people.

    I live by myself. My daughter was with me. Now she is with her mom because I cannot take care of her. Cooking, cleaning everything is getting harder. Risks of my multilevel surgery not going well is too much 1] palsy 6-8%? 2] no fusion 3] surgeon nicking 4] structural issue 5] no improvement of symptoms 6] infection... I still have to take a chance to survive.

    Emotional support is important. I used to be strong. In last few months of suffering I act like a baby in need for a care...

    So you are not alone.. many of us are in this situation.
    MRI shows C4-C7 severe steonosis. Pain in hand.
  • Asil65AAsil65 Posts: 112
    edited 06/01/2015 - 9:35 PM
    I am so sorry to hear about what you have been going through. Support from our loved ones is so important. I give you so much credit for working when your pain is an 8. I could not have done that. I agree with the above posters that I hope that your husband is supporting you. Giving you a back rub when you need it, getting you a hot pack or an ice pack helping with chores. I think because you are still working through all of this pain maybe people do not realize how much pain you are in. Maybe it would help to see a psychologist just to have someone to talk to . Do you have the ability to stop working collecting disability? No one knows how painful nerve pain is until they feel it. I am so sorry. Will be thinking of you.
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