Asking for help isn’t easy. But when my debilitating disease flares up, I often need help. There’s the physical and mental aspect of managing my rheumatoid arthritis when my symptoms are raging — plus I am a single mother, which means I have to look after my son as well as myself. I couldn’t do it without help.
Over the years, I’ve learned that help can come in all shapes and sizes and from all kinds of people in my life and community. Some consistent, some once in a while. The trick is getting used to asking for it — and realizing there are probably a lot more ways to benefit from the help of others than you might think. It is also important to know who to ask for help.
What Going Through a Rheumatoid Arthritis Flare Feels Like
A flare is a time of heightened disease activity. An RA flare can strike out of the blue, lasting a few hours to a few days or even longer. I’ve been in flares that have lasted several months. For me, flares are common a week or few days before I’m due for another dose of my biologic infusion, after surgery, or after a stressful event. Getting sick with an infection — whether a cold or COVID — can also send inflammatory arthritis into a flare. When I get, say, the flu, it can take a long time to recover because it’s not just from the viral infection, but the way it also aggravates my RA.
Another culprit to my flares can be from my comorbidities — anxiety, depression, fibromyalgia, endometriosis, and osteoarthritis — can all cause bumps or flares in my day that have no time frame.
Flares cause unrelenting fatigue and swelling in joints like my feet, knees, or hands, which in turn causes pain. During a flare, I spend most of my time either resting or focusing on self-care. One of the most frustrating parts of flares with RA is how far behind I get on what I need to do. As a single mom who has many responsibilities, flares are a major, and I mean major inconvenience.
I’ve written before on how to support someone through chronic illness but now I am focusing on what others can do to lend a hand when our disease gets ugly during a flare.
To start, learning about your loved one’s condition is the first step to really knowing how to help someone with chronic illness. Read up and ask them how the disease impacts their daily lives. You’ll be bound to think of ways you can help by listening and learning (and listening in and of itself is great support).
Here are some more ways to help your loved one when they’re in a flare:
Let them rest
When I have pain and fatigue, what I usually want most is some rest — and that rest might be exactly what helps me get out of the flare. Giving us rest can mean being flexible with our plans, tackling a chore or two, or watching my kid for a few hours.
Listen without giving unsolicited advice
Trust me, we’ve tried it all: the supplements, the diets, the doctors, the exercise plans, the meditation apps, the supplements and everything in between. I know you have good intentions but asking if we’ve tried turmeric and gone keto doesn’t take away our disease or help everyone. Maybe try asking us if we have been taking care of ourselves lately?
Reflect back what someone says about how they’re doing
I don’t mean word for word, but there is something comforting about when a friend or even a doctor reflects back in their own words what they understand I am saying after listening. It means they’re hearing me and can be incredibly validating.
Don’t get mad if someone is MIA
We are not ghosting you. During a flare, someone may just need time to rest and heal. Being responsive to texts and emails can be challenging.
Give them time
If you know someone with a chronic illness and they’re on a deadline for you, try to be understanding if their disease gets in the way. Flares often strike out of the blue.
Tell them you’re there for them
Even if someone doesn’t ask you for help, letting them know that you’re there if they need you can go a long way or might make them feel comfortable enough to ask you for the help they do need.
Don’t complain or criticize
Please don’t make me feel worse if I ask you for help. Remember: It took a lot for me to ask in the first place. There are some people I avoid asking help from because they usually respond with complaining about having to do something or questioning why I need the help.
Also, be sure don’t comment on how things are going for us right now: We know our house is a mess, that we look tired, or are behind on everything.
Bring food
A great way to help anyone going through a flare is to bring them healthy meals. Cooking can be a challenge when dealing with pain and fatigue. Making it to the grocery store can be out of the question when certain joints feel as if they are on fire.
Many people have dietary restrictions, though, so make sure you ask before bringing them a casserole that might make them feel worse. Or offer to pick up groceries or order us takeout.
Visit during our preferred hours and don’t overstay
Mornings and early afternoons are my best hours — anything after 7 or 8 pm and I turn into a grumpy, tired, arthritic pumpkin. Ask the person you’re helping what their best windows are. Also: Keep the visit short (unless they specifically request otherwise). Social interaction can unfortunately be exhausting for us.
Provide a distraction
It’s pretty boring to be stuck in a state of fatigue and pain. Send us memes, recommend a good show, or come over and distract us (albeit briefly).
Attend doctor appointments (and make them fun)
One thoughtful way to help is to offer to take someone to their doctor appointments and, if they’re up for it, get lunch or coffee afterward. Getting out of the house, having company, and doing something fun could mean a lot to someone who’s been stuck at home.
Help with the ‘great reset’
After a flare, it can feel like my life and house is a disaster zone. I feel overwhelmed with everything I need to catch up on. I call this period the “great reset” — when I try to get back on track with everyday life and activities. If there’s anything you can do to help them get back in the swing of things, whether it’s putting away laundry, running carpool, or taking over an errand or two, it can make the post-flare period feel a lot less overwhelming.
In the end the best support you can give someone coping with a chronic illness flare is simply being their friend. You’ll figure out what kind of help they need, and how you can provide it.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
