Understanding rheumatoid arthritis (RA) for carers

For most people, living with RA fluctuates between good and bad days. With careful management and appropriate treatment, many people with RA can minimise their symptoms so they can lead a full and active life.1

Nevertheless, friends and family can sometimes struggle to appreciate what life is like when symptoms such as pain and fatigue aren't under control.


What does it feel like to live with RA?

  • You're in excruciating pain
    • On good days, you still feel a dull ache in your joints. With a flare, you're in constant agony and your body aches from head to toe. It feels like acid is eating away at your joints or a sharp knife is digging into them, while walking feels like there are rocks in your shoes. Mornings can be worse, waking up in pain with everything so swollen that you can't move your joints, like they're frozen in place. Sometimes it can take you more than half an hour to get out of bed.
    When pain is unbearable, people living with RA have trouble keeping up with everyday life. However, many people with RA can effectively manage their pain with treatment and by adopting strategies that help deal with pain.
  • You feel exhausted
    • When you have RA, fatigue can be a problem. Your muscles are weak and you're often out of breath. Sometimes you don't have the energy to cook, clean or look after the kids. A good night's sleep is a thing of the past and even when you sleep well, you don't feel refreshed and rejuvenated the next morning.
    Fatigue is very common for people with RA and sometimes they can't find the energy for everyday activities. Fortunately, there are ways they can learn to manage tiredness and improve the quality of their rest so they can continue to lead an active life.
  • Your relationships are tested
    • With RA, helping around the home or catching up with friends becomes increasingly difficult. Sometimes people just don't understand why you can't do some things and you're tired of explaining why. You feel like you've lost your independence and you frequently have to ask others for help. At times it's humiliating because you can't do basic things for yourself and the pain makes you tired and irritable so you can snap at others even when they're just trying to help
    RA can impact everyone close to those that live with the condition. Together with their friends and family, people with RA can improve communication skills and develop strategies that overcome the strains that RA can put on relationships.
  • You're emotionally drained
    • Leading a normal life can sometimes feel out of reach and you're frustrated because you can't do some of the things you loved to do. You might be scared or worried about what's happening to you, or what's going to happen next. You don't know how bad it will be tomorrow, next week or ten years from now.
    RA can cause people to feel down, which makes their life even more difficult. Even though RA takes an emotional toll, accepting and adapting to life with RA is an important step in taking control. People with RA can learn to manage the emotional impact of their disease, and there are ways that you can help them too.

Understanding RA
Understanding what it can be like to live with RA can help you be even more supportive and find more opportunities to help your loved one living with RA.

Please note: RA is a complex disease and the presentation may differ between individuals. The experiences depicted here are not those of specific patients but are based on several reported perspectives of patients with RA, and may not represent all patients' experiences.

Complete the F.L.Ex program yourself. Please be aware that the program is designed for people with RA.

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References
  1. Arthritis Australia. Arthritis information sheet: rheumatoid arthritis. May 2015.