Begging for understanding

Hi my name is Vicki. I was diagnosed with RA and Fibro at the age of 42 right after the death of my son. I am 53 now.
My RA started in my ankles and knees. I was working as a restaurant manager and on my feet for hours on end. When I finally went to the doctor I could hardly walk because the pain was so intense. I was given my diagnosis and told I would only get worse, not better. From that point I was given a walker and started on MTX and Humira as well as narcotic pain meds. I was given a referral to a rheumatologist who confirmed my doctors diagnosis as correct. Within a year or two I was in a wheel chair and eventually a motorized chair. Just recently I have begun walking again and now since knee replacement surgery I can walk again with no help. Although my ankles and hips do flare up but I have pain meds that take the edge off enough in those times that I manage. Pills and injections that are just a part of my life now.

My question is how do you get other family members and friends to understand you?? My husband tries hard as do my daughters. My grandchildren just know Grandma is sick and can’t hold them much any longer. However other family members including my parents just don’t get it. They act like I enjoy being in pain or just simply love being on these meds. Not long ago my Dad told me to just go take another pill I need to get high again anyway. I have been told by my brother that I should go get a job instead of letting them all support me. Disability is not a charity, we worked for every penny we get. They hate that I park in handicapped parking. And so on and so.

I am asking if any of you also have had problems getting others to understand that these are real diseases and that they are very painful. Any help before the Holidays and family time would be greatly appreciated.

Vicki in Iowa

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Comments

View Comments (10)
  • Elle
    4 years ago

    I feel for you and have a RA condition similar to yours, except I’m still working full time.
    My folks don’t quite get that my arthritis moves around from time to time and somtime thinks I cry wolf.
    My rheumatologist doesn’t believe in narcotics at all. Prednisone and advil are the only drug he perscribes for
    pain so my days are hard. The olny good news is that I’ve only have 3 years left till I retire.

  • Virginia Carner
    4 years ago

    Blessed that my Mom understands, but unfortunately it’s because 2 of my sibblings also have autoimmune disseases…I left my husband after 20 years because he couldn’t understand…I can’t be around people arguing, can’t be forced to “hurry up” when it takes every ounce of energy to try to move at all…we need t-shirts that say “I might look well, but the glue that holds me together has failed and it hurts so back off”

  • Kellie
    4 years ago

    I feel very bad for you. My husband tries to be understanding but doesn’t always succeed. I don’t know or care what my extended family thinks. You can’t choose your family. It’s hurtful when they treat you badly. Have you told them how much their attitude is hurting you? If it continues, your best move might be to limit contact with anyone that is causing you extra stress. As you know, stress can cause a bad flare.

  • KarenG.
    4 years ago

    I understand – my family can’t figure out why I am like I am,and said I Should not use my handicapped parking permit, that I should save it for a real handicapped person…. Some days are rough…. I just pray and go on. Prayers for you!

  • Heather Wysong
    4 years ago

    Thank you for sharing your story! I am now starting xeljans and prednisone after the enbrel is only working for about 2-3 days! I have been told by my son that I can’t use the weather excuse all the time! I might suggest to print info on RA and leave it on your tables for family to get educated and then take them with you to your RA appointment! I think family members think sometimes it all in our heads but it’s not and we don’t have symptoms like bump on our skin or drippy noses to show them how we are suffering! But take care of U most times we have to do that because no on else will! Praying for you over the holidays!

  • W. Casper
    4 years ago

    I totally understand how you feel. I’ve been sick or six years and I am completely alone.My husband does not understand.I have three children ages 14, 10, 6 that help and get it more than he does. They automatically help with things like putting my socks on or opening jars. My husband is blind to all of this and I must ask for assistance. The rest of family really don’t understand the physical pain and limitations set upon me. I’ve been mentally strong until the last few months. I have had a hard time with flare ups and meds not working, It’s really broken me down emotionally and I feel helpless. I think for women as mothers it’s most difficult. We are the ones that keep everything running smooth with the household. Since I’ve been down these past few months, it really scares me how little the closest family I have don’t fully grasp the severity of my disability. They say things like ” I know you don’t feel like it but can you”…….and they ask me to do something for them. Just try to be strong and take of yourself

  • Carolyn Haney
    4 years ago

    I know exactly how you feel I’ve had family members say things that make me feel like it’s my fault that I can’t put on a happy face ant pretend all is well. I’ve had the same things said about parking in handicap spots, they just don’t understand how we seem to look ok on the outside but the pain that they can’t see is very real! I hope your family will someday understand what you deal with every single day. All the best to you

  • Carolyn Haney
    4 years ago

    I know exactly how you feel I’ve had family members say things that make me feel like it’s my fault that I can’t put on a happy face ant pretend all is well. I’ve had the same things said about parking in handicap spots, they just don’t understand how we seem to look ok on the outside but the pain that they can’t see is very real! I hope your family will someday understand what you deal with every single day. All the best to you

  • Mariah Z. Leach moderator
    4 years ago

    Hi Vicki~ Thank you so much for taking the time to share your story. First of all, I’m very sorry that the first doctor you saw was not more optimistic and supportive. Although RA is a degenerative disease there are lots of good treatment options available today so there may be something out there that would work for you and make things get better!! Unfortunately getting friends and family to understand what you are going through can often be a challenge. Many of us have experienced the things that you are describing and the holidays can often be particularly stressful because of that reason. I encourage you to keep your eyes on the RheumatoidArthritis.net articles as we will be releasing some articles on this very topic in the coming weeks: http://rheumatoidarthritis.net/page/2/

    And please remember that we understand what you are going through and we are here to support you!

    ~Mariah~

  • Ali
    4 years ago

    I think it is really important to learn to do what is best for you. YOU only know how YOU feel – your family doesn’t have to live with chronic pain. There should be NO shame in handicapped parking or being on disability. It wasn’t your choice to get an illness and try and do your best to not let what your family says affect you or try and change your reaction to them to express how you feel. I wish you nothing but the best and hope this helps.

    XO,
    Ali

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