If you’re living with sickle cell disease, you know better than anyone that a pain crisis doesn’t call ahead.
You can’t predict exactly when a crisis will hit, but you can decide how ready your home is when it does.
For many people living with sickle cell disease, that preparation is about more than comfort. It’s about reducing unnecessary movement, making everyday tasks easier, and having what you need within reach when pain makes even simple things feel difficult.
The goal isn’t to turn your home into a medical facility. It’s to make your space work better for you on the days when your body needs you to slow down.
Here’s where to start.
Pick one comfortable area—a bedroom or another quiet room—as your go-to place when a pain crisis hits.
Keep the things you typically need there: water, medications, your pain-management plan, a phone charger, blankets, entertainment, and anything else that helps you settle in.
The less you have to move around the house looking for things, the better.
Think of it as your ready-to-rest zone.
Heat can be a useful comfort measure for sickle cell pain; The National Heart, Lung and Blood Institute (NHLBI) specifically recommends applying heat to painful areas. If a heating pad, warm compress, or another form of heat is part of your usual pain-management routine, don’t make yourself search for it when you’re already hurting.
Keep your preferred heat source in or near your crisis spot, and use it according to the manufacturer’s instructions to avoid burns.
If you use a hot-water bottle or another heat source that requires preparation, consider keeping the supplies together so they’re easy for you—or someone helping you—to grab.
Dehydration can worsen sickle cell pain, so make drinking fluids as easy as possible.
Keep a filled water bottle or another beverage you tolerate within reach of your bed or favorite resting spot. If you prefer a particular cup or bottle because it makes it easier to drink throughout the day, keep it there.
You don’t need a complicated setup. The point is to remove the extra steps between you and something you need.
Follow the hydration guidance you’ve received from your healthcare team.
Don’t make yourself remember where everything is during a crisis.
Keep your prescribed pain medications and a copy of your individualized pain-management plan together in one consistent, easy-to-reach location.
If someone else may need to help you, make sure they know where to find that information.
A partner, roommate, or family member shouldn’t have to search through multiple cabinets while you’re in pain.
Extreme temperatures can trigger problems for some people with sickle cell disease, according to Cleveland Clinic, so pay attention to what your body tells you about heat and cold.
You don’t need to keep your entire home at one temperature. Instead, make it easy to adjust the space as needed.
Keep extra blankets nearby during colder months.
Have a fan available during warmer weather.
Dress in layers so you can adjust without having to change clothes completely.
If you know that certain temperatures or weather conditions tend to trigger symptoms for you, plan around them when you can.
A crisis can make walking painful or exhausting.
Take a look at the route between your bed and the places you use most—the bathroom, kitchen, front door, or wherever you typically rest.
Move anything that could become an obstacle, including:
Do this when you’re feeling well. You don’t want to discover that your hallway is an obstacle course after a crisis has already started.
Cooking may not be realistic when you’re in significant pain.
Keep a few foods on hand that require little preparation and that you know you can tolerate. That could mean soup, oatmeal, crackers, frozen meals, prepared foods, or ingredients for a quick smoothie.
You can also make a backup plan for the days when even heating something up feels like too much.
Know which delivery service you use, keep a few reliable options saved, or identify someone you can call for help.
The goal isn’t perfect nutrition during a pain crisis. It’s making sure you don’t have to solve the question of “What am I going to eat?” while you’re hurting.
RELATED: 8 Ways to Live Your Best Life With Sickle Cell
Pain already demands plenty of your attention. Your surroundings don’t need to add to the load.
Think about what makes your space feel calmer and have those things ready: dimmable lighting, comfortable bedding, headphones, a favorite playlist, a television remote within reach, or a quiet place to rest.
These things won’t treat the underlying cause of a pain crisis, but relaxation and distraction can be useful additions to a broader pain-management plan.
Your crisis space should feel like somewhere you can stop doing.
RELATED: Stress Less: Effective Techniques to Find Your Calm
Your pain-management plan shouldn’t exist only in your head—or only on your phone.
Keep a printed copy in a place where someone you trust can find it. You can also keep a digital copy on your phone.
Make sure the people who live with you know:
This isn’t about giving someone else control over your care. It’s about making sure they can help you effectively if you need them to.
RELATED: Meet Daniel Cressy, the 23-Year-Old Who Beat Sickle Cell to Beat His Dreams
A prepared home is only part of the equation. The people in it should know how to respond when you’re having a difficult day.
Tell the people you live with what a typical pain crisis looks like for you and what kind of help is actually useful.
Maybe you need someone to refill your water bottle. Maybe you need help getting food. Maybe you want to be left alone unless you ask for something.
Be specific.
And make sure they know what would warrant urgent medical attention.
If you become too ill to explain what’s happening yourself, having someone who understands your condition and knows where your care information is can be invaluable.
RELATED: Why Black Patients Deserve Better Sickle Cell Care
Preparing your home can make a manageable pain crisis easier to navigate, but it is not a substitute for emergency medical care.
According to this CDC Sickle Cell Disease Emergency Guide, seek immediate medical attention for symptoms such as:
If you need emergency care, bring your pain-management plan and medication information if you’re able to do so.
People living with sickle cell disease have reported experiencing skepticism and delays in receiving appropriate pain treatment.
Knowing your care plan and having someone who can help communicate your symptoms may make it easier to advocate for yourself—but you should never delay emergency care because you’re worried about whether someone will believe you.
RELATED: How Black Patients Can Advocate For Better Pain Management
You don’t have to completely redesign your home to prepare for sickle cell pain.
Start with the things that would make the biggest difference for your body: a clear path to the bathroom, water within reach, a comfortable place to rest, your medications within reach, and people who know how to help.
A prepared home won’t prevent every pain crisis, but it can remove some of the little obstacles that become enormous when you’re hurting and sometimes make a difficult day easier.
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