9 thoughts on “Living with Disability and Its Affect on Relationships

  • January 23, 2014 at 5:55 pm

    It was great to see your post. About 6 years ago I got very sick and needed my
    My gall bladder out, various complications arose and I ended up with chronic
    Pain syndrome. Of course this also happened in the hospital that I worked in
    Which as you can imagine also caused significant implications!!
    I found generally people are so ilinformed, on chronic pain, they believe all
    Who have this “diagnosis” are just after opioids etc. it’s a real shame!
    Education for all is the key, and esp healthcare workers! There is a real
    Stigma attached. My marriage did break down… But I believe all part in parcel.
    I am in a much better place now. Have found a wonderful new partner who
    Is very supportive. The only time my chronic pain flairs up is with surgery
    Now and then really only for about 24 hours, I feel very lucky! I feel like I am
    Winning! It has taken a good 5 yeArs to get to that point though. Good luck
    To everyone I believe it takes time for your body to heal but you will get there.

    Reply
  • January 25, 2014 at 8:28 am

    I have had the bit about explaining my condition to interested parties bite me in the ass. I’ve had people ask a question and then ask follow up questions. I was so sick that I had trouble remembering to turn the conversation around (brain fog). And then, that same person will go around telling everyone all I ever do is focus on my illness. I no longer trust people to be sincere. Just sincerely interested in gossiping about others if it helps them be an information maven.

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    • January 25, 2014 at 10:11 pm

      One of the neurologists put down a dx code that I hadn’t seen before: 300.81. When I looked it up I couldn’t believe a NEUROLOGIST had the expertise to dx this rare mental disorder that I have no symptoms of.

      Saw 4 other neurologists at Mayo who gave me a dx of the variety of neuropathic pain I have in hands & both arms.

      I requested to see a psychiatrist & saw him last. In no way did he think I had this “Briquet’s Syndrome” (300.81) & I would have thought this neurologist might have run it by the psychiatrist to get his input. No way & now that is on all my doc records & insurance co. who have already been bugging me when a physical therapist that said I was amplifying my pain to get meds.

      My pain doc said in no way am I abusing pain meds (random urine tests just like I’m on parole); getting them filled at the same pharmacy, etc.

      You’d think it I were drug seeking I would have continued on the morphine (30 mg) , but that just put me to sleep so doc said try 10 mg & see if you can get used to it & then slowly increase to a thereupetic dose. No, I wasn’t willing to give it a week. I was so tired on even the 10 mg so stopped after 3 days.

      Just downloaded a booklet written by a doc who has chronic, intractable pain & even faced these kinds of slanderous remarks. It gives tips to help you cope w/pain & w/your not having it be the focus of your life. Ha, my social life has dwindled to doc appts., therapy appts (both had & body), & numerous TESTS…

      If I can figure out how to I will send a link or info. on doc’is helpful booklet.

      Also reading a book called something like: “Full Catastrophe Living”– many DBT skills if you are familiar w/that…

      If I were drug seeking wouldn’t I want morphine, etc.?

      Reply
  • March 3, 2014 at 8:51 pm

    I can connect with this post. Similarly I have been going through times, since 2010, that things have been beyond tight. My children/daughter and I have been living under poverty level on and off since 2010. I can deal with this, but it is nice to talk to “friends” just to relieve a little stress. But, unfortunately, like many with illnesses, people think I’m making this stuff up or don’t want to do things for myself or that i am looking for their financial assistance rather than just wanting to talk about things. Thankfully that is not a medical or permanent disability, but similar in how people interact with another person – or chose not to because they cannot handle it.

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  • March 23, 2014 at 11:40 am

    I also am a silent pain sufferer. Have been many years. Many people I know have chronic pain. Some pain can be seen some can’t. Honest to God I am so sick of hearing about others in pain 24/7. I would love to talk to others about their pain but they act like they are the only ones in the world with pain. They wear like a badge of honor. I wish I could find a shirt that says I know you hurt, so do I, so stop complaining 24/7.

    Reply
  • April 2, 2014 at 5:06 pm

    I began treatment two years ago for Small Fiber Neuropathy, but lived with the chronic pain for six years before it was diagnosed. Today I take several medications just to get me through the day.

    Reply
  • June 19, 2015 at 12:38 am

    that was very good ty vm

    Reply
  • February 18, 2016 at 4:20 pm

    Great article! Thanks for sharing. 🙂

    Reply
  • October 3, 2018 at 3:48 am

    Try misunderstood words. This is the prime reason people tune out any subject. Making sure one fully understands everything they are reading or listening to is the key to comprehension and interest.

    Reply
 

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