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You Have Rheumatoid Arthritis

You wake up to the sound of your alarm, but immediately close your eyes again, as the exhaustion makes your eyelids feel like they have weights pressing down on them. You hit snooze several times, wishing you could stay in bed all day. However, you have commitments, so you open your eyes again, with more conviction this time, and set your determination to wake. You begin to slowly curl and unfurl your fingers, feeling the stiffness running deep throughout your hands, and you know it will take at least 30 minutes before they begin to loosen up. You rise to sitting, and have to pop your knees before they will allow you to swing them over the side of the bed. After rolling your ankles in circles and trying to squeeze the stiffness out of your toes, you take your first step, and pain shoots through your foot. You take a sharp inhale, move your foot gingerly a bit more, and then attempt walking again. Lumbering toward the bathroom, you turn on the water in the shower as hot as it will go, hoping the steam and heat will penetrate through the stiffness and ease away the pain. Standing in the shower, you wonder how you are going to make it through the day.

Or maybe you wake up a few minutes before your alarm goes off, and you actually feel rested. You smile, as you are so used to feeling fatigued that waking up with a feeling of energy is something you revel in rather than taking for granted. You become aware of your body, and you are relieved to discover that your body is not wracked with stiffness this morning, that you’re free of the feeling that your body is a shirt that’s been dipped in starch and left on the line to dry. You are able to get out of bed without any physical preparation. As you head to the kitchen for coffee, your toes and your ankles have a subtle hint of achiness, but this doesn’t slow you down. Rather, you barely acknowledge the feeling, as you have been in at least some pain every day for months or for years now, perhaps even for decades, and you have learned to push mild discomfort away from your consciousness, much as people who live near a paper mill become accustomed over time to the smell.

You have woken up to a “good day” where the pain will be manageable and you can feel somewhat productive, and you are grateful for this, because you can never anticipate how you will feel when you wake up in the morning. Some nights you go to sleep only after the assistance of painkillers or muscle relaxers, as the pain is too sharp to allow for non-medicated slumber, yet when you wake up in the morning the pain has evaporated. Other mornings you wake up after a fitful night of tossing and turning in a listless attempt to find comfort and you find the pain is every bit as sharp as when you went to bed. Still other mornings you wake up to inflamed joints even though you felt fine the night before. There doesn’t seem to be any rhyme or reason to this disease you have. While you have come to understand that, you continue to be infuriated with the unpredictable nature your body has taken on.

If it’s a bad day, where you feel the impact of each step you take through your swollen joints, minutes turn into hours. You pay attention to every subtle movement. Opening the car door and turning the key in the ignition is painful, as is each little bump in the road. The strain of maneuvering the steering wheel turns up the flames already simmering in your wrists and elbows. Unfortunately, reaching your destination and getting out of the car doesn’t improve things, as you still have to walk to your workplace and endure the pain of sitting or standing. When co-workers ask you how you’re doing, you’re not sure what to say. The honest answer would be that you aren’t feeling well, but you don’t know how this colleague will respond to the truth. Sometimes when you tell people you have rheumatoid arthritis they seem uncomfortable, or they make lighthearted comparisons to the osteoarthritis they developed in a single joint, assuming they understand how you’re feeling, or they make a statement full of pity and disbelief that someone so young could have arthritis. None of those sentiments will make you feel any better, and you worry about the risk of seeming less competent or valuable for having a disease, so you decide to respond that you’re doing well or feeling pretty good, and you go on with your day.

When you finally make it home, you are exhausted. All you want to do is lie down. Depending on how much pain you are in, you may honor that desire or you may continue trying to push through the discomfort and fatigue that weighs on you like a wet wool blanket. Regardless of whether you lie down once you enter your home or wait until bedtime, you will lament the things you did not get done during the day. You had a full to-do list, but your pain and fatigue thwarted your good intentions. Feeling the RA through your body makes each step feel like trudging through knee-deep snow, so you go at half-speed. You know that your immune system is confused, that it is attacking the good guys with “friendly fire” instead of fighting intruders. You know that you have a disease. Yet, you still are surprised by the huge impact of these symptoms on your life, somehow unable to lower your expectations of what you can achieve in a day. You want to accomplish on a bad day what you can accomplish on a good day. You are frustrated. Over and over and over again, you are frustrated.

When it’s time to go to bed, you may be able to fall into slumber with relative ease. Or you may have a series of preparations that involve topical ointments or patches to assist with the pain, or use splints or heating pads, or you may take medications to quiet the symptoms enough to sleep. You will arrange your many pillows just so, ensuring that your joints have as much support as possible. Then, whether quickly or after several minutes or hours of insomnia, you will fall asleep, having no idea how you will feel when you next wake up.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rockcandi
    1 year ago

    Tamara, you gave me a link to this article so I can have my husband read it and I’m going to do so. Thank you so much for writing this and for sharing the link with me. I’ve tried to explain to him but you explained them in a much better way.
    And maybe coming from someone else who hasn’t told him a million times will make him pay more attention. I do feel badly for saying that he doesn’t understand. He does understand a lot of what I go through, as much as someone who’s watching his wife go through can understand, but when it disrupts our life so much he gets frustrated at the disease and since he can’t take it out on the disease he takes it out on me. But I think reading it or hearing it the way you wrote it will help to better understand. Thanks again!

  • Tamara Haag moderator author
    1 year ago

    Hey Rockcandi, I’m so glad that you found this article to be of value. I know what you mean, that you don’t want to blame your spouse for not being able to fully understand when he is trying to be supportive, but that sometimes blaming the disease can feel like blaming the person with the disease. It is a thin line, and humans will never get anything right all the time. Thank you for sharing some of the challenges you face, as I know they are familiar to many here in this community, and they certainly are to me. Please continue to reach out and share your experiences here whenever you need an ear, as we certainly understand what living with this disease truly means. Wishing you all the best, Tamara

  • Julie
    4 years ago

    Hi Tamara… I’m newly diagnosed and not stable on my medications yet. Your words say everything I feel but wasn’t able to explain to my husband.
    I’m going to show him this and am sure it will help him understand.
    Am struggling to come to terms with this disease, I’m 54 and its hit me like a bolt from the blue.
    I feel people may think I’m exaggerating the level of pain I experience some days so tend to keep it to myself.
    It has changed my world beyond belief, physically and mentally.
    I don’t laugh anymore.

  • Tamara Haag moderator author
    4 years ago

    Hi Julie, I’m so glad you’ve found this community. The first months after diagnosis are extremely challenging. It’s hard to assimilate this new reality into one’s life. Finding the right treatment can take time, as individuals respond differently to the various prescription options available for RA and because many drugs can take weeks or months to reach full efficacy levels. Do keep that in mind as you struggle during the “wait time” for your treatment plan to go into full effect. I am thinking of you, and hope you find some comfort in this community. Take Care, Tamara

  • Pamela Gilbert
    4 years ago

    Hi Tamara
    Reading your story is my story. I have had arthritis of various forms from age of 11 . After having my younger children in my late 20s it was down hill from there .
    I have fought it every day , pretend to everyone else I am OK. Laughing twinges off so others don’t look at me in that “confused ,what’s up ” . I laugh about it so they do .
    Your story explains how I feel every day. But now at 60 in couple weeks I struggle more. Laugh less but still laugh as much as I can . Family see you coping and wonder why can do it one day and another I can’t move.
    I wish you the very best enjoy your children and family. Go with flow each day . I am going to get my now grown up children and grandchildren to read your story as it explains how I have been over the last 40 or so years.The last 10 the worst so not done to bad “pretending to cope “Laughing is best medicine.
    Best wishes
    Pottypam

  • Tamara Haag moderator author
    4 years ago

    Hi Pottypam, It does sound like we have a lot in common! Thank you for sharing your experiences. I’m so glad you found the article helpful, and I hope it helps your children and grandchildren understand how RA impacts your life. Take Care, Tamara

  • Steppiemum
    4 years ago

    Wow, Tamara, this says it all! I’m newly diagnosed and often try to find the right words to explain how I feel to my family and friends. With your permission, I’d like to forward this on to my “close ones.”
    Chris

  • Tamara Haag moderator author
    4 years ago

    Hey Chris, I’m so glad you found this helpful. I actually wrote it for the exact purpose you mentioned, so that people with RA could share it with their loved ones to help them better understand what it’s like to live with the disease. My hope is that it will allow people to walk in our shoes for a few minutes, imagining what it would be like to deal with the challenges we face. So please, share away! I wish you all the best as you learn how to incorporate your diagnosis into your life. The first few months after diagnosis can be especially challenging. I hope this site is a source of information and support to you. Take Care, Tamara

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