Is it Okay to be well?
When I was in the hospital with lupus, I made friends with all the other teenage “regulars” who, like me, were frequent admits of the eighth floor. All of my new friends were dealing with life-threatening, chronic illnesses. My “chronic kids crew” and I bonded quickly over medications, physical therapy, and even razzing the nurses. We were thick as thieves. Sadly, one thing eventually separated us – life itself. I moved on, and they did not. Every single one of my friends’ lives were taken by their chronic illness. Every single one eventually passed away. My “crew” became a party of one.
For many years, I felt guilty that I was given the chance to live and they were not. I got to grow-up and they did not. Was it fair? Was it right for me to be happy? Did I deserve to be well?
Cancer survivors have labeled the feeling behind those questions as “survivor guilt.” And whether you have had cancer, lupus, or are a war veteran – whatever the case may be, those feelings can happen, are valid, and are important to talk about.
So let’s talk about it…
First off, let me say that remission guilt or “survivor guilt” is NORMAL and common. Remission guilt refers to the sense of guilt that one may experience when he or she survives or “feels well” when others in the same classification do not. For those suffering with lupus or another lupus overlap disease, this may happen when you experience your first remission. Remission is a period of time when your disease is “quiet” or “inactive.” You may feel great, but also feel bad that other people that you know with lupus are still suffering.
Some may deal with remission guilt if they experience a sudden onset of the disease (maybe nephritis), receive treatment, and are able to get back to normal life – relatively unscathed. They may feel sad that others who have nephritis are still suffering, while their case is manageable.
Why do we feel this way? Well, in short, there is a sense of implied comparison when one is around others that have gone to battle and served in the same war. With lupus, you may share nearly identical scars, have walked the same exhausting road, or felt similar pain. And it is natural to compare and contrast lupus war stories. There is a sense of camaraderie – and when you share an experience with a stranger, they become like family, and with “remission” you suddenly feel like you are abandoning that family.
There is also an “identity crisis” that may happen as well. Now, lupus is not your entire identity, but it is a part of your identity. When remission happens, you may feel like your long-time roommate just suddenly got evicted and now there is a big empty room and you are not sure what to do with it.
Dissociation is the process of emotionally separating or disconnecting from something. This may happen when you start to experience guilt from being in remission. Personally, I know the “disassociation game” well. I mean, come on, when you are finally feeling well, the last thing you want to do is talk about lupus, be reminded about lupus, be fearful that your lupus is going to come back, and feel terrible that others are still suffering. So the knee-jerk reaction is to disassociate yourself from it altogether. You don’t mention it; you don’t go to support group meetings; and you put all things “lupus” in a purple box and bury it away.
Hmm…..but does that really work? In my experience, it doesn’t. The winds of life inevitably unearth that buried box, no matter how deeply I have buried it.
Okay, so, if I am feeling guilty about feeling well, and disassociation doesn’t work, then, what does?
Sounds cliche right? Well, there is a lot more to this “acceptance” thing than one might think. Acceptance is simply recognizing and acknowledging the moment is what it is. Acceptance has no bearing on future events. You can accept something as true in a moment (say, you are having a flare) but it doesn’t mean
that you won’t work towards making healthy choices for the future. Or vise versa. You may accept that you are feeling well now, and be grateful, but that doesn’t mean you can predict how you will feel tomorrow or the next day, and so on. Acceptance does not mean giving up, living in denial, or “dissociation land.” Acceptance is seeing the truth of your reality today and living that truth.
DON’T PLAY THE SAME GAME
Some of you reading this may be thinking, “This definitely doesn’t apply to me. I have NEVER experienced anything close to remission.” And that may be accurate. Maybe you have never technically been in remission. But, I would bet that you have experienced good days along your lupus journey. And I am sure you were so grateful for those good days. The saddest thing that I see and hear in my role as Client Services Coordinator for Molly’s Fund is not the physical manifestations of lupus. It is when I see other people tearing each other down for being well. When people say, “You are definitely not as sick as I am.” That is called the “Shame Game.” It can happen when someone is doing well or in remission, or when someone is deep in the valley of a flare. Listen, just because you have never had a remission, does not give you permission to shame those that have. Instead, be grateful to see that others are doing well, because when someone else experiences “wellness” it is a glimmer of hope that you may (and probably will) experience it someday too. Also, be cautious of competing with your fellow lupus comrades. We are all on our own paths, and though we may have similar battles, there is but one you. As Dr. Seuss once said, “Today you are you, that is truer than true, there is no one alive who is youer than you.” And besides, the physical and emotional side effects of shaming are not positive. As tempting as it may be to shame someone who exhibits a different view, or wellness level than you, shaming them is not going to make you feel good in the long run. It’s not righting a wrong. It’s shame and it does not get you very far. “No man ever got very high from pulling other people down. The intelligent merchant does not knock his competitors. The sensible worker does not knock those who work with him. Don’t knock your friends. Don’t knock your enemies. Don’t knock yourself.” – Alfred Lord Tennyson
Not everyone will experience remission guilt. Certain factors, may increase the likelihood of developing those feelings of guilt, but acknowledging those feelings and recognizing that they are both common and a normal part of the human condition may help. Having an attitude of gratitude, healthy self-care (regular exercise, relaxing activities, eating well, sleeping well) is also an important part of healing from those feelings.
If your feelings of guilt are impacting your daily life on a level that it is difficult to function, then the support of a counselor or therapist might be a good suggestion. And lastly, don’t feel like because you are in remission you have to cut-ties with your local lupus support group. In the contrary, speaking with others who are currently suffering, helps validate your lupus journey and will offer hope to those who are newly diagnosed.
It is okay to be well. Don’t squander your good days with guilt, rather, translate those feelings into empathy and compassion. Use your experience to connect and uplift your lupus brothers and sisters. And celebrate how far you’ve come and where you are today.
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