Life doesn’t stop the day you are diagnosed with rheumatoid arthritis. Quite the opposite. It doesn’t take long to realize that you must figure out how to live optimally with rheumatoid arthritis (RA). Just like when other new things come into your life and into your home — a baby, a puppy, an elderly parent, job loss, illness, winning the lottery — adjustments need to be made.

Two Under-Recognized Aspects of Rheumatoid Arthritis

It seems like you should be able to plan for any of those circumstances. But there is a wild card attached to a diagnosis of rheumatoid arthritis. Two wild cards, I should say: variability and unpredictability.

Most people with RA will tell you that living with chronic pain is the most difficult part of having the disease. Rheumatoid arthritis–related fatigue is often mentioned second. Many, if not all, people with RA also find the variability and unpredictability of RA to be an enormous challenge.

Rheumatoid Arthritis Flares Can Be Unpredictable

Think about it. Historically, how many times have you made plans with the best intentions, but you needed to cancel at the last moment because rheumatoid arthritis refused to cooperate? There are myriad situations when this occurs, and some more important than others. Perhaps you needed to change the day you had planned to go grocery shopping, with the hope you will feel better tomorrow. Or perhaps you are forced to miss your granddaughter’s graduation. The latter is much more upsetting because there are no do-overs for graduations.

Consequences of RA-Related Variability and Unpredictability

If rheumatoid arthritis interferes with your plans with increasing frequency, you may become so frustrated that avoiding plans altogether and living a more spontaneous existence seems appealing. You may start to say “no” rather than “yes” when others try to include you in their plans. While it may seem easier in the moment to avoid making plans or to decline invitations from others who are trying to include you in their plans, you may be shortchanging yourself. Don’t cut yourself off from future experiences just because previous plans didn’t work out and needed to be changed.

Input From People With RA Suggests That Spontaneity Depends on the Person

I asked a group of people who have lived with rheumatoid arthritis for a long time what works better for them: planning ahead or being spontaneous. Ann B., a 57-year-old from Massachusetts, says, “Plans tend to backfire on me. I don’t tell my body I want to do something or it betrays me.”

Rebecca L., age 63, from South Carolina, adds, “It depends on the activity. If it’s travel related, that gets planned pretty carefully to ensure we can stay somewhere each night that keeps life easy — elevator, decent bed, not crammed with furniture, walk-in shower. We also try to keep our daily drives averaging about six hours on our massive road trips. But for just a visit with a local friend, I tend to start overthinking plans and shying away from them. For that, I would prefer spontaneous. That way, I know I'm up for whatever it is.”

Fifty-eight-year-old Karen Palmer, from Mason, Ohio, offers this perspective: “I tend to plan since I generally need the next day to recover.”

Pros vs. Cons of Spontaneity or Advance Planning With RA

So it seems there are pros and cons to both planning ahead and being spontaneous:

Pros of Planning Ahead With RA

Planning allows you to make the necessary arrangements to ensure that your needs are met.
You can follow a game plan to pace yourself and prepare physically by resting ahead of time.

Cons of Planning Ahead With RA

It is disappointing and frustrating if a plan goes bust. You may even feel guilty.
You may have stress and worry about your ability to participate in the days and weeks ahead.

Pros of Being Spontaneous With RA

Spontaneity negates the tendency to worry and overthink. There’s no time to worry.

Cons of Being Spontaneous With RA

Spontaneous events or outings may leave you feeling unprepared and anxious.
You don't have the opportunity to rest beforehand.
You aren't able to make adjustments ahead of time, such as clearing your schedule or getting work done.

Best Approaches to Plans When You Have Rheumatoid Arthritis

One thing is certain: Rheumatoid arthritis is variable, unpredictable, and at times, maddening for those reasons. Keep these rules in mind:

Always be kind to yourself.
Be realistic.
Be honest with yourself and others and don’t overshoot your true abilities.

Planning ahead and being spontaneous are each challenging in their own way for people with RA. It is not selfish to recognize that you have a chronic disease and, consequently, have needs that must be met. That fact simply cannot be ignored.

Whatever event or occasion you choose to plan for, or similarly, any spontaneous invitation you choose to accept, must be done conditionally. Meaning, all events or occasions, whether they are planned or spontaneous, hinge on how you feel at the time and if you can go forth. You, and those involved, must be adaptable, flexible, and yielding to the disease. That said, your willingness to accept a spontaneous invitation does not mean you will always be able to do so.

Thank the people in your inner circle who understand and accept this. Those who truly understand and who realize your well-being must be the priority are the ones you want to surround yourself with. Those are your people.

Focus on Developing a Positive and Realistic Mindset

Here’s the bottom line: This will happen. If you have RA, it will happen that you must say no or you must change plans because you don’t feel well. When it occurs, it is beyond frustrating. That frustration just makes you feel worse.

Be honest with yourself. It happens to everyone, not only people who have RA. Anyone can get sick or have an accident that forces them to change plans. In the case of others, though, an acute illness or rare incident is usually to blame, not a chronic illness. It is infrequency, in those cases, that makes it more tolerable.

While uncertainty and unpredictability are given with RA, your goal needs to be developing strategies to help you through it. In her April 2019 Psychology Today blog post titled “Chronic Illness and Uncertainty,” Katie Willard Virant, a psychotherapist practicing in St. Louis, discusses “illness uncertainty.” She explains that illness uncertainty disrupts our perception of control. Reclaiming control to the extent we are able helps us cope with the situation. One example she offers is meditation. Meditation, especially mindfulness meditation, helps us live in the moment. The practice allows us to release feelings of why me, why now, and what if. It actually helps us learn to tolerate uncertainty.