As someone living with rheumatoid arthritis (RA), you may feel like you’re not always on top of things. The planning, organizing, and wrangling of work-arounds to deal with the disease’s pain, fatigue, and brittle joints can be hard. You have to think through what you’re capable of (meal prep? drive kids to school?) and what resources you can tap when you’re not up to the task (takeout? carpool?). And then there are doctor’s appointments, trips to the pharmacy, maybe physical therapy, exercising, and sometimes work too. It feels like more than enough to manage, but it’s not.
If you have RA or any chronic condition, you also need to plan for your future. You have to take into consideration your medical wishes and needs and how your care community and family will know them. You also must think about financial planning, how your insurance needs will be accommodated, and how your treatment might change.
Keep reading to find out some of the most important things to take note of to make your future with RA easier.
Talking with your family
Each person with RA has a unique view on just how much to tell family members and their community. When you’re considering who to tell, take into account who might be responsible for your care as you age and if you become disabled. Future caregivers will have to financially and logistically plan for your mutual needs. You should also express your wishes in the case of your incapacity by completing a living will and advance directives.
Kids and RA
If you don’t have children yet but are considering starting a family, start an ongoing conversation with your care team about your plans.
The most commonly prescribed disease-modifying antirheumatic drug (DMARD) is methotrexate, which can terminate a pregnancy or cause birth defects if taken when pregnant. Men who are taking methotrexate and want to start a family should stop taking the drug at approximately three months before they and their partner try to get pregnant. Timing of discontinuation of medications should be discussed with your physicians.
If you already have kids, consider how to talk with them about RA. When they’re young, this may be as simple as explaining that you need help because of your body’s limitations.
“I never had a first conversation with them about it because they’ve grown up seeing me have RA,” says Jessica Sanders, a 34-year-old mother of three. “Sometimes they ask questions like ‘How did you get it?’ or ‘Can you do this?’” Sanders hasn’t discussed any possibility of a genetic connection with her children, who are all under age 13.
While RA isn’t considered hereditary, the risk of having it is increased when there’s a family history. Consider whether this is something you want to discuss with your children when you feel the time is right.
Having RA means you spend a lot of time juggling doctor appointments along with your regular activities, all while you try to practice self-care like getting enough rest and eating well. That might cause you to neglect your finances, but you’ll regret doing so in the long run.
“Start talking now so everyone is confident in the event an important financial decision needs to be made quickly,” says Don McDonough, regional executive at Merrill Edge. “To simplify everyday financial chores in the future, plan now to set up direct deposits and automatic bill payments to make sure bills are paid on time, especially in the event of a health crisis.”
Planning your medical future
RA’s chronic and progressive nature means you can’t really let your guard down. You must plan and monitor your disease and its treatment. Even though the latest treatments are making remarkable advancements in slowing disease progression, there’s still the possibility of progression. Your treatments also might stop working.
If you are currently taking nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and a DMARD such as methotrexate, you might want to consider taking one of the newer class of drugs, biologics.
Sometimes called biologic DMARDs, these work similarly to DMARDs by blocking the cellular pathways to inflammation. Also like DMARDs, biologics stop pain and swelling as well as limit bone damage. However, one drawback of biologics is their expense. If you’re thinking about trying biologics, you’ll want to not only talk to your doctor, but also find out what your insurance will cover.
The future with RA might seem less than bright, even though advanced treatments offer a very good chance of pushing your disease into remission. It’s possible those medications will stop working for you, or you might develop new symptoms or have problems with frequent infections. Knowing this, it could be tempting to lose yourself in today’s more immediate concerns rather than thinking too far ahead. But taking time today to plan not just for tomorrow but for years from now could make a huge difference for managing your prospects.