Community Views: Support When Flaring
Living with psoriatic arthritis (PsA) means going through periods of flares. These times of worsening symptoms are rough. A true struggle with increased pain and inflammation.
Defining the right kind of support
Learning what you need in a flare is valuable for navigating PsA. In addition to treatments, support becomes vital. We wondered what support looks like for you. To gain your insights, we turned to the Psoriatic-Arthritis.com Facebook page.
There, we asked community members to tell us: “What type of support do you need when flaring?” Some interesting themes emerged!
Compassion, not advice
Pain exacts a huge emotional toll. When in a flare, you need understanding from the people in your life. Too often, loved ones fail to extend compassion. You receive judgmental words or ignorant advice.
It hurts that loved ones do not try to learn about this disease. They do not fully see the impact. You feel dismissed when you need to feel heard.
- “What I do not need to hear is, ‘You need to move more; that will help you feel better.’ I need to hear, ‘Sorry to hear you are in pain; is there anything I can do for you?’”
- “It would help if my spouse tried to understand.”
- “I need someone to hear me and just listen.”
- “Someone to validate the pain.”
Need for solitude
Flares drain all your energy. You turn inward. Your focus is on the pain and getting your body through the flare. You do not have space for interacting or connecting with others. You need to retreat and be alone. Strength comes from solitude.
- “Understanding and acceptance from others that the only way I can deal with things is to withdraw and be as solitary as possible.”
- “I really just want to be left alone. All my energy is focused on dealing with the pain.”
- “I prefer to be by myself.”
Help with daily tasks
While in a flare, the pain makes daily chores difficult. Anything that requires movement is a struggle. Many of you shared the value of others offering to help. You need others to take responsibility for cooking, cleaning, and laundry so you can rest.
It can be hard asking for help. It means a lot when others take the initiative without being asked.
- “Someone to help with cooking, chores, and medical tasks like calling doctors and squabbling with the health insurance company or the specialty pharmacy.”
- “Someone to worry about dinner so I can curl up and veg.”
- “Help with laundry and cleaning.”
- “Help getting groceries if my pain is in a major joint.”
- “Someone to help me get dressed and keep the chores in the house done.”
Soak in warm water
Water soothes the achy joints and muscles. You appreciate soaking in a warm bath or hot tub when in a flare. Water helps loosen the joints and feels comforting. It enables you to relax.
- “I spend a lot of time in the tub – 2 to 3 hours at a time just to be able to move for an hour!”
- “Honestly, I need a hot tub.”
- “Boiling hot Epsom salt soaks.”
Time to sleep
Rest is critical during a flare. Your body needs time to sleep. Sleeping provides an escape from the pain. Dedicated time to sleep without guilt or stress helps ease the symptoms.
- “Uninterrupted SLEEP!”
- “I need to be able to really sleep and wake up naturally, not be woken before my body is ready.”
- “Good medicine and a bit more rest than usual.”
- “I feel bloated and pain everywhere in my bones, and I just need a warm bed and sleep.”
Will you help others by taking our Psoriatic Arthritis In America survey?