May 16, 2022
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Tod Kapke/Stocksy United
Anyone with a chronic condition likely remembers the day they were diagnosed and the emotions that came with it. But not everyone knows what it’s like to be told they’re in remission.
I’m one of the lucky ones. After over 2 years of managing regular appointments, daily medication, and debilitating pain, my doctor told me the news: I was in remission from rheumatoid arthritis.
I experienced a range of emotions that day. I was simultaneously relieved and elated, but underneath those happy emotions lurked something darker and more sinister — I was experiencing guilt.
A series of guilt-ridden questions flooded my mind: Why am I OK now while others are not? Why me, instead of my sister who was diagnosed just 2 months after me? How come I can enjoy life again while others continue to suffer?
This was a happy moment in my life, but I felt undeserving of it, and years on, I still haven’t completely shifted those emotions.
To get a better understanding of why you’re experiencing remission guilt, it can be helpful to define what guilt actually is.
“Guilt is one of the negative emotions, on the ‘sad’ scale alongside feelings like grief and loneliness,” says psychotherapist Geraldine Joaquim. “We all feel guilt at times, whether for real physical actions — for example, if you caused someone harm — or for imagined guilt, such as thinking you’ve harmed someone.”
We can also feel guilty when we perceive that we are doing better than others, be that in terms of health or in other areas. This is a kind of “survivor’s guilt,” Joaquim says, and it’s a primitive reaction.
“On an evolutionary level, guilt is an emotion that helped shape us as human beings and provides context for our societal framework,” she explains. “As our species evolved, our primitive ancestors connected with others, they formed tribes with the well-being of the collective being paramount.”
Joaquim says this continues today. We still have a deep-rooted need to belong in our social groups and a chronic illness can serve as a common denominator between us and our peers.
“When you no longer have that illness in common, there’s an imbalance in your self-identity, especially if that illness has been long term,” Joaquim says. “Seeing members of your ‘tribe’ suffer makes you question why you aren’t.”
As a result, Joaquim says people who have recovered from chronic illness may feel unworthy relative to those who continue to experience illness.
“No matter how illogical it may be, they may feel that they do not deserve to be free from the illness,” she says.
For me, the feeling of remission guilt comes and goes. Sometimes, it’s a sharp pang, and other times, it’s a lingering feeling of remorse. Sometimes, I’ll dwell on how unfair it is that I’ve recovered while others, including people close to me, haven’t.
I feel bad that I can no longer empathize with what my sister is going through the way I used to. Knowing just how debilitating a chronic illness can be makes the fact that there’s little I can do to help especially difficult.
Joaquim says there’s a broad spectrum of emotions associated with remission guilt, and how someone experiences it is highly individualized.
“People will feel [guilt] in different ways. For some, they may feel great sadness, anger, anxiety, and even grief as they try to rebalance. There may be a sense of loss, both of the illness and the part it played in their life and in how they relate to people who continue to have the illness,” she says.
In some cases, it can lead to more serious mental health concerns.
“Others may experience post-traumatic stress disorder (PTSD), an anxiety disorder associated with serious traumatic events,” Joaquim says.
She says people may feel unable to express their feelings, particularly if their self-worth has been impacted. In turn, this can result in negative self-talk that includes phrases, such as:
“People may blame themselves for others’ suffering. In some cases, it can result in self-destructive behaviors in an attempt to ‘match’ other people,” says Joaquim.
Ignorance isn’t bliss, especially when it comes to processing difficult emotions. It’s best to face your emotions head-on and give yourself adequate time to process them.
Joaquim says it’s important to acknowledge why you feel a certain way and to develop awareness to prevent slipping into destructive behaviors or patterns of thought.
“Try writing your feelings out, so you can consider them outside your head. Or speak to a friend or professional about them; it’s good to ‘borrow a brain’ to hear other points of view,” Joaquim says.
I’ve found this piece of advice particularly valuable. It’s helped me untangle feelings of low self-worth and reminded me that I’m just as deserving of good health as anybody.
Building your self-worth is a journey and not something that happens overnight. But I’ve found free-writing in a journal and getting worries and negative thoughts out on paper to be very helpful. Writing out my thoughts has offered me insight into how I really feel about myself and the power to redirect those thoughts by repeating positive affirmations.
Reminding myself that I’m worthy of feeling good in my body — just as much as anybody else is — has helped alleviate feelings of guilt.
Managing and even recovering from a chronic illness can be incredibly stressful. And it can prove especially difficult if you’re tackling feelings of guilt and remorse.
Now is not the time to be hard on yourself. Rather, Joaquim says, it’s an opportunity to practice self-compassion. When you feel lingering feelings of guilt, she advises asking yourself, ‘What do I need right now?’
“It could be as simple as a little time and space to absorb those feelings, it could be something around self-care, (or) you might need to reach out for more support. Do whatever is best for you,” she says.
Finding a way to help can be incredibly liberating, and it can allow you to put your experience with chronic illness to good use.
“Helping others is a great way to alleviate feelings of guilt, and [as a survivor], you have great insight into what they’re going through. Although, don’t assume you know exactly what they’re feeling,” Joaquim says.
She points out that continuing to feel ill won’t make others feel any better, but actively finding ways to help might.
Guilt can be all-consuming, and if you’re experiencing it because you’ve recovered from a chronic illness, it can take away from the positives of being in good health.
The good news is that a small degree of guilt is common and can be managed.
Guilt can come from a place of feeling unworthy or like you’re undeserving of good health, so working through these emotions is a good place to start.
Remember: Above all, remission is something to celebrate. While being free of your chronic illness may bring on its own challenges, you are worthy of the healthy life you worked to have.
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