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Why won't anyone listen to me

I was just diagnosed with RA. To be honest I am not doing well with the thought of being in pain the rest of my life. Although I guess it's good to know why all of my joints hurt that doesn't help with wrapping my head around it. I try to talk to my family about it but no one will listen to me. My husband gets this glazed look about him. My sister in law does the same thing. Was talking about it with my niece today and all she had to say was "Isn't AIDS an autoimmune disease. What is that supposed to mean! Even my Mother had no interest in listening to me. So I am alone, in pain, feeling helpless and frustrated. Tried to work in the garden yesterday and it hurts so bad to hold the hoe to make my mounds it almost made me cry, almost(never let them see you cry), so now I feel useless. I have yet to see the Rheumatologist. Still waiting on the doctor to make the referral. I wish they could feel the pain I do everytime they take their sweet time. Great now I'm bitter and mean. Anyway this is how I am feeling and at least no one is stopping me from saying it here.

  1. Hi Melissa, sorry to hear about your struggles explaining RA. Many people don't understand this disease until they are educated. It can leave us people with RA feeling lonely and misunderstood. There are many stories on the website about trying to explain this disease to others. In the meantime, seeing a rheumatologist and getting on a treatment plan will hopefully help reduce your pain and stop the progression of the disease. Let us know if you have questions and hope you can find support on this site. Best, Kelly (Site Moderator)

    1. Thank you Kelly. My attitude is a bit better today. I am still waiting on the doctor but eventually I will get there I guess. My little finger and foot are hurting today. It's so strange for my body parts to just hurt for no good reason. Feels like someone is sticking pins in me. Big sharp pins. I have been reading alot about this disease and learning all I can so I will be educated when I go to the Rheumatologist. Keeping positive
      Melissa

      1. Sorry for what your're going through. I saw your comment and thought "yeah, me too!" but it's more the doctors aren't listening to me. I don't have a firm diagnosis of RA yet and have to wait five more weeks to see the rheumatologist (even though I WORK at the hospital he's at! No special perks there), but it has taken three months just to get my doctors to take me seriously that this feeling dirt tired all the time, having pain in my joints and bones, and just feeling like s*** ALL the time and barely being able to get work and what I have to do at home done is no longer sustainable. My family is trying to be patient, but I think they're sick of my "whining" too. I seriously had to bring my husband to my last PCP appointment to demand more bloodwork and that was where they got the positive autoimmune titer. Looking forward to a definite diagnosis so I can move forward, but sort of crushed by the idea of it all and the progression. My grandma just passed away recently from failure to thrive due to pain from osteoporosis and arthritis and was all mangled and that is NOT how I want to live. I'm only 36. In short, I hear you.

        and BOY does it all hurt twice as much since they went and pointed it out! lol.

        1. I hear you just fine Melissa. Dealing with the same thing from my husband. He has osteoarthritis, and when I was given my RA diagnosis, what I got was "welcome to my world". He just doesn't get it. 2 totally different illnesses. While folks may be sympathetic, I don't feel like anyone understands the pain, the fatigue and did I mention the fatigue??? I work full time and its really gotten difficult as I feel like I'm in a fog most of the time. I look at spreadsheets and forms and KNOW I know what to do with them, it just won't come to me, so I just look at them and blink. And getting around at the job site is horrible.

          Gardening has been one of my favorite things - would dig in the dirt and just feel troubles drop away. Can't do it right now either, just too painful. I really miss my flowers and veggie time.

          And what do you say when asked, "well how are you?" - just be polite and say "oh fine", when you obviously are NOT fine, do you tell them the truth?? (probably not, as most do get that glazed look you mentioned), or just say "getting by, thanks"....

          Melissa, know you will be heard here and we GET IT!

          1. Thank you Still Flaring. It is nice to be heard and not only heard but understood. Finally went to the Rheumatologist almost two weeks ago. Still know nothing. He told me to buy fish oil. Took a bunch of blood and xrays of my hands and feet and then walked out saying make an appointment in a month. So I go back on the 27th of July. Who knows maybe he will actually tell me something then. I guess first visit is really just to confirm my PCP's diagnosis. Since I was RF negative they have to do more tests, do a history and crap. I don't know but I am tired of my everything hurting. I try to have a good attitude but it is hard when you never know when or which joint, limb or whatever will decide to fail. If I don't have RA then someone better figure out what it is. He said "probably RA" I am confused.
            Anyway , end rant. Thanks for reading"listening".
            Melissa

          2. Keep hanging in there, Melissa. Let us know if you have questions and hope you can find support with us. All the best, Kelly

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