Managing Guilt with the Unpredictability of Chronic Illness

If you have a chronic condition like rheumatoid arthritis (RA), canceling plans last minute can come with the territory.

I canceled plans last week…

I canceled plans last month…

I didn’t schedule any plans for later… all because of a possible flare.

If you have RA or another chronic condition, you know how flares have a way of interfering with your plans.

RA is unpredictable. High pain, debilitating fatigue, and limited mobility can strike out of nowhere. Even when in remission, many people with RA have to plan around their medication hangovers.

If you have a chronic condition, you know that any sense of control you once had is a facade.

It doesn’t matter what your intentions are — RA can often dictate your day. A 2005 clinical review states that most RA patients plan and live just one day at a time. This day-to-day method impacts others involved in our plans, and it can make us feel guilty or shameful when we have to cancel.

Although many people with RA feel bad when they have to cancel plans, a 2014 study found that people with RA don’t feel more guilt or shame than someone without RA. The level of guilt an RA patient reported was unrelated to the level of pain and physical functioning.

Guilt, it turns out, is more psychological than chronic-illness related.

Although your guilt may not be directly caused by RA, it doesn’t make it any less powerful. Controlling your feelings of guilt and shame can help you deal with the unpredictability of your chronic condition.

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Acceptance is key

Start with accepting your RA for what it is — an unpredictable chronic condition with a vast array of debilitating symptoms. Acceptance means controlling only what you can control, like your diet, exercise, lifestyle, and mindset.

A 2017 study found that a mindset of acceptance helped alleviate the impact RA had on people’s quality of life. Accepting RA and the challenges it can throw at you can actually lessen its influence on your life.

Remember: When controlling what you can control, focus on you and only you. Other people’s happiness, behaviors, and lifestyle are not related to your emotions or your RA. You cannot control other people’s thoughts, only yours. You cannot be concerned with managing their feelings.

Navigating family life

People with RA often have a lot of shame and guilt associated with their family interactions.

An interesting 1976 study found that women who got married when they had RA reported less guilt than women who were diagnosed with RA after marriage. Half of the women in the study also reported difficulty coping with their husband’s anxiety about their condition.

Chronic conditions and their impact on daily life can cause anxiety in intimate relationships.

Do you have a spouse that’s frustrated? Open communication about how you’re feeling and your expectations can help immensely. Instead of dwelling on subjective emotions that can be left to interpretation, make them a list of specific tasks that are helpful. For example, “Empty the dishwasher, switch laundry, pick up food.” Be as specific as possible.

Leave the guesswork and emotional commentary out of day-to-day tasks. If you want to talk about how RA makes you feel, how it impacts yourself and others, and what realistic goals are for you and your family, save this for another, dedicated conversation. Feelings and thoughts that bubble up in the heat of the moment can cause more tension.

Parenting can also cause feelings of guilt. It’s very common to feel as though you’re not as involved with your kids as you should be because of your RA. Remember that it’s your life, your rules. If you’re not meeting the standards of your life’s guidebook, rewrite the guidebook!

It’s also likely that the level of interaction that you’re dreaming about is unrealistic and even uncommon. Parents without disabilities need rest days, too. Think of this as an opportunity to teach your children kindness and acceptance of people at all levels of ability.

Navigating the workplace

Talking with employers is tricky. Missing work due to chronic, unpredictable illness can have a lot of emotions attached to it. Stick with the facts on this one. Tell them how your condition may affect your work, the solutions you’ve found, and how they can support 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.

And remember, there’s no need to feel guilty about your work capabilities if you’re always trying your best and communicating your needs clearly.

Navigating plans with friends

Talking with friends about RA and making plans can be an emotional roller coaster.

Choosing to spend free time with people other than our family and employers takes coordination and effort. Often there are multiple spouses, child care, and financial considerations involved, too. Talking with friends about your condition and unpredictable symptoms can leave you feeling vulnerable.

Stick with plans that can be changed last minute. Look for activities that are refundable and can swap dates. Make plans that are close to home, require minimal physical exertion, and are reasonable. It helps to have a backup plan, too.

Keep a list of things you can always do with or without an RA flare. This way, if the exciting plans you made are just not possible, you are ready with suggestions. No guilt, no argument, no excess or duplicate planning is needed.

This can go the other way, too. You can keep a list of things you want to do but are unable to during your worst days. This way, if you have simple dinner plans, but feel great, you can suggest something bigger!

With a fluid plan B, there is no time for guilt or other emotions.

A few last tips

Don’t overshare. There are a lot of emotions when someone with chronic illness unloads. There can be a lot of misinterpretation, too. Although passionate talk therapy with our closest loved ones may feel cathartic at the time, it can also cause some permanent damage.

Try to find outlets dedicated to you and your emotions. Counseling, support groups, online forums, and social media groups are great places for this. This will prioritize your relationships and help you manage your runaway emotions like guilt and shame.

Don’t overcommit. Trying to do too many things at once, or too close together, will surely lead to exhaustion and flares. Avoid the guilt of canceling plans by spreading your commitments out. A busy weekend of family activities or back-to-back all-nighters are sure to result in canceled plans the next day.

Manage life’s stress to avoid guilt. When we are short-tempered with people we love, it’s usually because we are stressed and not managing our emotions. This is human nature and unrelated to RA. If we manage our emotions, which in turn manages our temper, there will be fewer arguments and fewer things to feel guilty about later.

The takeaway

Guilt and shame are natural human emotions that can feel amplified when you live with a chronic condition. Remember that you cannot control exactly when you have a flare and need to cancel plans, but there are ways you can minimize your feelings of guilt.

Planning ahead, setting reasonable expectations, and communicating openly with your loved ones can all help you navigate the unpredictability of RA.