[About RA] Letter to those Without Rheumatoid Arthritis

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how can i explain rheumatoid arthritis to loved onesLetter to “Normals”:  Those Without Rheumatoid Arthritis

by Thesirenscream


A letter that I copied and pasted from somewhere else and changed to suit my own situation. I think I changed quite a bit of it but I don’t remember. Feel free to take mine and copy and paste it yourself, change it, and give it out! It made my family and friends a lot more empathetic to the things I was going through. It’s another long one.


Dear Everyone,

I am posting this letter to help you understand my feelings as I deal with arthritis and the changes it continues to bring to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled and in a wheelchair or will I be one of the lucky ones who have very little joint damage? Will I ever be able to get out on my own or will I have to depend on my mother for the rest of my life? If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears. Likewise, please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for about a year now. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome to.

I am angry. Arthritis has taken so much away from me. I can no longer do many of things I once enjoyed doing. I have never and will never run with my children. I sometimes have difficulty just completing simple tasks, such as opening a jar, showering, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. I also want you to know that arthritis moves around. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Arthritis does not forgive. Also, if I ask for your help with something generally it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For awhile I wouldn’t ask for help and it would make me feel worse later. I’ve learned to deal with the embarrassment rather than putting myself through more pain.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. Please don’t tell me you know how I feel. You don’t. Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I appreciate.

Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. Don’t tell me how Aunt Martha cured her arthritis by drinking vinegar or your friend in Tibet that drinks an ancient tea or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible cure out there, I will know about it.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

I still want to be part of the “gang.” Please continue to invite me to participate in activities. I’ll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. I am more compassionate to others with similar aches and pains and I am a better person because of it. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

With love,

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13 comments… add one

  • Kirsten

    February 2, 2012, 2:34 pm

    Beautiful. I’m in a good season now with my RA, but I wish I had this 10 years ago when I was working full time as a middle school teacher and in daily pain–how to explain to my colleagues?? I will keep this in my back pocket should I need it in the future. I know well enough that this good season could end tomorrow..
    Thank you for posting,

  • Linda littrell

    February 2, 2012, 4:12 pm

    I am so glad someone understands how I feel. I have 6 autoimmune diseases , plus 23 other diagnoses. I have b

  • Linda littrell

    February 2, 2012, 4:13 pm

    It is a bad day

  • Lori Desko

    February 2, 2012, 11:41 pm

    Katy, I read your version and Katy, I’m so proud of what you had to say.
    It’s the Gods Honest truth. RA takes everything we love to do away. And like
    You said, it’s our children that suffer. Just tonight Carly wanted me to play
    Doll house, and you know, between my back and now my leg I CAN’T DO IT!
    I cried myself till I couldn’t cry any more. Katy Bravo, you said everything
    I feel in my heart and mind. Thank you for that <3

  • Kim

    February 3, 2012, 9:39 am


    I just wanted to let you know I’m studing RA and all other Auto Immune diseases out there, I feel your pain and please don’t ever give up to all of you, There is so much research and technology and wonderful RA Doctors out there!

  • Abraham Morejón

    February 4, 2012, 4:17 am

    I really loved this. Very illuminating for someone who doesn’t have it, but who’s “seeing” a RA Chick.

  • Vickie Lavender

    February 5, 2012, 12:30 am

    Thanks for voicing how so many of us feel day to day. RA is a daily battle for all of us. I was lucky to have raised my son when I was still in good health, now I am raising my grandson/now son with this disease and it is really hard on him. Bless his heart, he tries to understand but I know there are day when he really doesn’t. I see the anger, confusion and hurt in his eyes and it breaks my heart. I can not count the number of days I have cried secretly because of this. Even though I have the disease, I know it hurts his precious heart much more than it hurts my joints and bones. Thank you.

  • Wanda

    March 26, 2012, 9:44 am

    I really appreciate the letter. I will be shareing it with my husband. I know hw really tries but sometimes he make snide remarks like boy nothing got done this weekend or thought you were going to get laundry done. he really is very sweet but has no idea how hard it is for me. the latest is so and so has it and gets around. it is just very frustrating. so thanks for the letter.

  • Sandy

    May 23, 2012, 7:18 am

    thanks for your very accurate description of living with a chronic painful condition. I used to have a doctor who still gives me grief about my pain and having good and bad days. She believes once you have a good day you can not have a bad day and have it belong to the same problem. Drives me crazy. It is enough to make me want to wish the disease on her, but I wouldn’t actually wish it on anyone. I was diagnosed with RA last year but I have been living with reflex sympathetic dystrophy and fibromyalgia for the past 18 years as well. Please know I am grateful for your letter and send you the biggest hug ever! I wish you all good days ahead.

  • Sandra Frederiks

    June 16, 2012, 8:06 am

    I forgot to mention I have a better Dr. – he is the one who decided to test me for RA. Sometimes you need a different opinion for good reason. Someone always graduates at the bottom of their class, my previous Dr. was most like that one.

  • Cindy

    June 21, 2012, 8:10 am

    Thank you for capturing all my feelings in a letter i
    can share with “normal” people.

  • Ricci

    July 8, 2015, 1:58 pm

    What an incredible letter. I felt that in my bones. I am newly diagnosed (literally a couple of weeks) but have had the pain/symptoms for 3 years or so. I used to have sporadic pain (like every 2 months or so). All of a sudden it has become daily. I just don’t understand how this all happened. I feel confused, angry, and irritated by it all. But trying to keep a smile on my face. My sons summer camp teacher laughed at me this week and asked why I was signing out my son so slow and walking so weird. I felt humiliated. I have 3 kids and a husband and am trying to keep my head up.

    • Candy Tompkins

      August 23, 2016, 10:27 pm

      I was a mobile xray tech for 27 years and I also had a t shirt business. I worked sometimes 60 to 70 hours in a 4 day workweek. I have hurt constantly for the last 10 years. I thought it was my crazy hours. Little did I know that something more sinister and more immobilizing was running through my body. People have no idea what we suffer with until they walk in our shoes. ( If we are able to walk that day or limp or whatever)!!


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