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Didn't know a support group/ community existed online.
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Vickiem1 posted:
I'm 32 been diagnosed with back problems since 23, I wish I knew this was here yrs ago. I have had several people ( friends, family, dr.s, people in my community) judge me, don't believe me,think because I'm young and you can't see my pain think I'm faking or not disabled. Been through depression and thoughts of why continue to live like this since I was told I was only going to get worse. I'm so tired of people judging me because they don't know the pain I feel everyday, and think I just want to get doped up. Which I don't I have always taken all my meds as prescribed. It's frustrating that some of my own family thinks of me like that. I'm tired of having to explain why at 32 I'm disabled. And been hurt since 23 yrs old, people always tell me you should just get over it and move on. If I could work and be like a " normal" person I would in a heartbeat! I just wanted to say I think having a online support community is valuable to someone like me who feels alone in this, and their area doesn't offer something like this. I once mentioned to family I should start one here where I live and they told me great a bunch of people feeling sorry for themselves in one room. People discriminate against me all the time I'm looking for a pity party just some people to talk to who understand. Others recommendation for a support group of chronic back pain sufferers/ chronic pain in general/ disability isn't so easily seen, is to go to NA-AA MEETINGS! It would be nice to know someone somewhere knows how it feels to be looked at with a disgusted look because I have to stand in the handicapped line! I guess I'm just venting thanks for reading!

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trs1960 responded:
Have you ever thought about seeing a pain management psychologist? I did and it was a fantastic experience. I was hurt later in life at the age of 40, but I still look for intents and purposes healthy. Suffering through some spells of self loathing o was having hard time. The psycologist explained to me, " you're not missing limbs and you're not in a wheel chair. Unless you take your shirt off and show your scars no one would guess the extent of your injury and pain." He helped me understand that I need to focus on me and not worry about the perceptions of others. My GP doc wrote me a scrip for s disabled plaquerd. I had some frustration asking for it as I didn't want to admit I was disabled. Long story as he has been my doc for over 20 years and knows my story well. He said, " screw them! You don't need to use the plaquerd all the time, but half your back is broken! I don't want you carrying stuff from a store out to no mans land of a parking lot!" I still limit my use as I have this reoccurring vision of some little old lady trying to find a place to in which she can get her wheel chair out to roll up to the store. You can't change was has physically happened to you, but it's still your life to live. I'm amazed by people who are in wheel chairs and have adapted to a new life while retaining a charismatic life. I have a hard time seeing people in wheel chairs as it is by miracle alone that I do not now reside in one.. Many people just don't understand and until they suffer they never will. It is my hope that my loved ones will never understand a day in my world.

Tim
 
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findingme responded:
Sweet heart,
I can't believe what I just read. I know it was 2 months ago for you, but I needed to know that I wasn't all alone. Thank you.
Neither of my sisters have had anything to do with me for years and it finally came to an end when they shut out my children. too. they ignored both of my kid's birthday's and when I had the nerve to be upset about it, it was as my sisters called it my, "Erratic, drug addict behavior." I didn't even have the right to be upset that my whole family ignored my kids on their birthday's and they said that I was a bad mother for not throwing a big party for everyone. I'm a single mom, 2 kids, ex that doesn't help very much at all. I still have to work 40 to 50 hours a week to pay the bills. I have had no one to help me since this started 4 years ago and my pain and mobility is getting worse. I am so scared! I hurt so bad by the end of the day, sometimes all I can do is cry and I feel like my kids see me cry too much. The only reason I don't think about dying is because my mother died several years ago, so I know I have to keep going, keep trying, I try not to take my meds as often as I can, but I never take more than I am supposed to. But now I am reading that people have gotten in trouble with their MD for not taking the meds! that's nuts! So your family disowns you and treats you like the face of evil for taking them and your MD will fire you if you don't!?!? Because of all the drama that my sisters have caused over this my father stood actually came to my house, threatened my life while he broke my hand putting it through the wall. I had to call the police. If I had not had this back pain, it would have been just me being mad that they forgot about my kids. Why do people behave that way and then stand on the side of being right. why would someone who is supposed to love me leave me when I needed them the most. they said that they didn't even want to talk to me anymore. the doctors tell me I'll have these problems for the rest of my life. I used to dance every day, I would walk for hours, I was strong, fast, lean and smart. here comes the sadness. Anyway, thank you
 
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aprilrose9 responded:
Dear Vickiem1, Sadly, we all deal with uneducated and unsympathetic family, friends, health care staff and strangers. When you think of it, how many times do you see something on TV or movies, making fun of the person with back pain.

Family members do not get it! At least in my family, this has been the case. My mother had RA and felt her pain beat my pain. Her reasoning? RA is in THE JOINTS! She would yell at me. I am a critical care RN, by the way. Funny, I think the spinal cord, as part of the central nervous system and the vertebra, being movable=joint.

I feel sorry for you. You have much on your plate and without the help you were hoping for and many of us expect at a time of need. I am guessing, but I would imagine there was disfunction in your family before you had the medical problems. I think many of these execerbate during periods of stress and times of need from a family member. See if you can reason with the most logical/reliable family member. Even if you must try an aunt or grandparent. Have them go with you to see your physician and receive a medical necessity explaination for the opioids.

I came from a messed up family, so I understand the behavior you have described and feel for you.

Take care,
April-Rose9
 
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An_250929 responded:
thank you for posting this. I, too, often feel alone, like the walls of my world are closing in on me and more and more people and things are left on the other side of that wall. What makes it all the harder is that voice inside my own head that tells me I haven't tried hard enough. I KNOW beyond a shadow of a doubt that I've done everything I could. But, that inner critic won't go away. So, dealing with both the inner and outer critics makes it worse. This isn't a Rocky movie. I made the effort for years to keep pushing, but failed. There are things I cannot do and I just want a chance to rest and heal and learn to cope.


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