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). As with any major change in your life, adjustments need to be made.
Under-Recognized Aspects of Rheumatoid Arthritis: Variability and Unpredictability
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 chronic pain is the most difficult part of life with 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, as well.
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, some more important than others. Perhaps you needed to change the day you had planned to go grocery shopping, with the hope you’d feel better tomorrow. Or perhaps you were forced to miss your granddaughter’s graduation. The latter is much more upsetting because there are no do-overs for graduations.
If rheumatoid arthritis interferes with your plans with increasing frequency, you may become so frustrated that you 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 those invitations from others, 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.
People With RA Suggest 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 60-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 66, from South Carolina, says, “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.”
Sixty-one-year-old Karen Palmer, from 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 tendencies 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: The unpredictability of rheumatoid arthritis can be maddening. 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: 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.
While uncertainty and unpredictability are given with RA, your goal needs to be developing strategies to help you through it and cope with the perceived loss of control. Meditation, especially mindfulness meditation, may help you 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.
