My life has been turned upside down from RA!

I’m 28 I was diagnosed with RA four years ago since then my life has gone down hill . My doctor said I have had RA since I was a teenager because of all of the damage that my body has. I have had four surgeries in the past two years one neck , two back and shoulder RA has destroyed my body I have tried several treatments none have worked I’m on pain medication and prednisone I tried Humira I’m about to start IV infusions of Remicade so we will see if it makes my life livable.

I’m not living right now. This is not living. It’s just not dying. I have 3 young children 8, 5 and 4 if it wasn’t for my wife I wouldn’t have survived this. My kids keep me going, they make me get up everyday! But they have to see me in pain all the time and I hate it they are always worried about me and that’s the worst part I try to put a smile on and not let them see me in pain. But they still know I want my old life back when I was full of energy and happy it has taken it’s toll on everybody around me. They are just aggravated at me all the time like it’s my fault they have no idea what i go through everyday I wake up in pain to bed in pain can’t cook or do simple things like cook or clean house, so the people who have to do it for me complain about it like I want people doing everything for me. I hate it. I’m a grown women that can’t do anything for herself or kids then people complain you couldn’t survive one day of my life!

So I hate you RA thanks for ruining mine and my family’s life cause its just misery right now. People post on here how they are not going to let RA ruin their life. It’s not a choice I made. It just did!

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Comments

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  • Mariah Z. Leach moderator
    5 years ago

    Hi Sarah –

    I was also diagnosed with RA as a young adult (I was 25) and I think it is a really a difficult time to be diagnosed because so much is expected of you at that age. Unfortunately it can take some time to find the right treatment, but I can promise you that when you do it can make a major difference in your quality of life. For example, I tried Remicade and then Enbrel, and Enbrel has made a huge difference for me.

    I also really do understand your struggles as a mom. I have only one child (a one year old boy) but with my RA I worry about the day when he notices that I can’t do the same things that all the other mommies do. What will I tell him? How will I make him understand? Will I ever be able to give him a sibling? Being a mom is a struggle when you are perfectly healthy, and it sometimes seems impossible when you have a chronic illness. And no one has a manual for how to do it!

    But I am really glad to hear that your family is so supportive. And I really truly hope that Remicade is the difference for you!! Please remember that the RA community is here to support you. Everyone’s experience with RA is different, but at the same time we have all been in your shoes. Hang in there!

  • Mariah Z. Leach moderator
    5 years ago

    Hi Sarah – You know what? I think it is good that your children understand that you are in pain. You are raising them to be empathetic and understanding, and those are wonderful traits for human beings to have. Though I certainly understand that you wish it could be different. Hang in there.

  • Sarah author
    5 years ago

    Its very hard since my children are at the age that they see me in pain and understand what’s going on. I tell them I’m fine and go about our day but they know my bad days and worse ones. They now are more emotional and sensitive to everything from seeing me in pain no matter how much i smile they can tell by the way I walk and the look of pain on my face I don’t notice I have the look but they do so does everbody around me . When they were little it was different but now they are very smart and understand

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