8 Ways to Manage the Unpredictability of Rheumatoid Arthritis

The only thing predictable about RA is its unpredictability. Here’s how to adapt at a moment’s notice.

Rheumatoid arthritis (RA) is a chronically unpredictable condition. Symptoms can occur any time, any day, and differ from hour to hour.

High pain days can make getting off the couch impossible. Debilitating fatigue can knock you down without warning. Managing the day-after medication hangover can be life-altering.

According to an article from 2005 written with RA patients, we can only plan day-by-day because of the unpredictable nature of the disease. It requires us to continuously adapt to whatever the condition holds for us that day.

If you have RA, you know that any sense of control you once had over life quickly feels like an illusion. It doesn’t matter what your intentions are — RA can often dictate your days.

But how can you take advantage of this predictable unpredictability?

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1. Control what you can

RA and its symptoms are often out of your control. But there are other factors that you can more easily control in your life. This might include your diet, exercise, lifestyle choices, and even your mindset.

These are all factors that could actually indirectly impact the severity of your RA. For example, a study from 2021 conducted among adults in the United States found that nearly 33 percent of RA incidence was attributable to smoking, being overweight, and low-to-no alcohol drinking.

Other lifestyle factors such as diet and exercise can also impact RA. Even meditating has been found to improve how one processes and manages pain.

It might be a trial and error game, or simply a fun adventure in trying new sports and foods, but the possible knowledge it could afford you about your diagnosis is always worthwhile. You might discover a new trigger or something that impacts pain in one joint.

Having a better grip on other lifestyle factors could actually lead to you predicting the unpredictability of your RA. That definitely feels like having one up on the condition!

2. Communication

Open, honest discussions are key to any healthy relationship. It might not always be a fun topic, but talking about your RA can help others be aware of how your symptoms can suddenly change.

Sometimes we have to make great efforts to be exceptionally clear when communicating how we are feeling at an exact moment. Don’t permit your friends and family to assume that you’re feeling the same as you were upon waking this morning or going to bed last night.

Friends and families don’t like to watch us having a difficult time. We have to find ways to guide them to participate in our lives. We have to allow opportunities for them to feel helpful and show their love. Be specific about what you want and what you need to prevent any miscommunications and also foster a loving, supportive relationship.

3. Talk therapy

Schedule dedicated talk therapy so that you can better manage the stress of unpredictable symptoms and the emotions that follow.

Seek counseling, a support group, a forum, or a social media group that checks in with you regularly. When a crisis hits, it’s helpful to know that there is a support group immediately waiting or a meeting already scheduled.

Worried that your unpredictable symptoms might interfere with this commitment? Find services that can be in-person or telehealth, with the option to switch last minute.

4. Flexibility is a valued skillset

Employment can be challenging with RA and its unpredictability. Flexibility is key, from both you and your employer. The ability to work alternate hours, leave for medical appointments, and take breaks during the day is crucial to managing RA. This might be harder to achieve in certain jobs, but this list of tips, or reading someone else’s experience, might provide some new suggestions.

It’s also good to know your rights, as employers should be able to make accommodations. If you have questions about the Americans with Disabilities Act, check out the Job Accommodations Network. It’s against the law to discriminate against someone with a disability. For further information on filing a complaint check out the Equal Employment Opportunity Commission.

Employers are also actively looking for flexibility as a skillset. Your experience with RA, and knowing ways to manage its unpredictability are invaluable for many different types of jobs. So, get this skill on your CV now!

5. Plan B’s and C’s

Making plans with friends can be hit and miss with RA! You might have to change plans to take care of yourself.

Having a plan B — and even a plan C — can help with the unpredictability of RA. I’ve learned that it helps if plans are refundable or can easily be rescheduled for a different date.

I keep a list of things you can always do with or without an RA flare. If the plans you made aren’t physically possible, you have a list of alternatives ready to go. On the flip side, if you have simple dinner plans, but feel great, you can suggest something more active! There have been countless times when I have suggested a last-minute switch.

It can sometimes help to explain your situation to your friends so they know you aren’t simply being “flakey.”

6. Lose the guilt

Guilt can be a perceived sense that you’re impacting someone else negatively. This is a feeling you create and can actually have complete control over.

Guilt is more psychological than chronic illness-related. This article from 2014 found that the level of guilt an RA patient reported was unrelated to the level of pain and physical functioning. Maybe even the guilt that we create is unpredictable!

Although it’s difficult, try not to feel guilty about canceling plans or not achieving what you had planned. Make a deliberate effort to simply lose the guilt. This way, you will be able to focus on yourself and your symptoms with a more positive mindset, and, hopefully, get back to other plans in no time. This article might help you put this into action.

7. Spread out commitments

I commit to only one event per weekend, one meal out with friends a week, and schedule rest time. Most importantly, actually rest during your rest time!

Even on your best days, overdoing it can cause a flare of pain, fatigue, or both.

Being consistent and prioritizing rest can reduce the occurrence of flares and unpredictable symptoms.

8. Go with the flow

Most importantly, go with the flow. RA is unpredictable, but so is everything else in life.

Sometimes we really have to just turn lemons into lemonade — or lemon sorbet, or lemon meringue pie, or use the lemon as a garnish on a drink!