Toxic Positivity (Part 2)

In case you missed it, check out Part 1 of this series!

Your resistance to only looking on the bright side is actually normal. Pushing down your feelings and pasting a smile on your face is toxic positivity. Toxic positivity is commonplace across many cultures today. Please understand that that does not make it acceptable. Let’s go back and think about all of these scenarios and why they don’t serve you on your HS journey.

"It could be worse"

This idea that things could be worse, and that you could or should compare yourself to others as proof, is harmful to both you and the person or parties you are comparing yourself to. Have you ever been on the receiving end of “It could be worse, I could be like so-and-so”? I have had people tell me that they thought they were having a difficult time until they remembered what my body was doing, and then they felt better. At no point did hearing that make me feel good. Does saying or thinking those things feel healing? I would propose that it doesn’t. If you are having an especially painful or exhausting day, week, or month, it’s okay to acknowledge it. You are still feeling pain. But you don’t have to involve anyone else in your process. This is your journey.

“It is what it is” seems to come up quite a bit. I find this phrase especially troubling because I have discerned that when fellow HS patients say this, they are paralyzed with fear or doubt. They have lost the will to advocate for themselves and are simply going through the motions. I would say that all of us feel this deeply, at some point. On average, it takes someone with hidradenitis suppurativa 7 years to get diagnosed, but it may take even decades because of how infrequently it’s correctly diagnosed. Many of us have thrown up our hands in defeat and disgust. Saying, “It is what it is” allows us to appear easygoing as if we don’t have a care in the world. But we do! Voice your frustrations, make a plan, settle for nothing but the best, but don’t ever think that you aren’t worth the effort.

The friend who means well

Let’s move on to the friend who means well. Her response is the equivalent of, “You’re fine, just look on the bright side.” Are you a negative person because you want to explain why it bothers you to want to wear something not restricted in color and style? No. But what she is asking you to do is make her feel better about what you are going through, either by not bringing it up or by masking it.

Why would someone ask you to be cheerful for their sake, even if they are your friend and should be supportive of your struggles as well as your triumphs? There are many layers to this, but we can start with denial. This friend may deny that there is any room for emotions except joy or positivity. Maybe she doesn’t understand or know how painful HS is, or doesn’t have any interest in knowing. In telling you that your HS saves you from buying clothes and therefore you should remain positive, she is indicating which emotions she finds acceptable. If this is a recurring theme coming from her, it’s possible that she will only want to interact if you are constantly “positive.” If you have friends or family who insist on this behavior, you have to decide if you are going to interact as your authentic self, or if you are going to play along and only project positivity. A facade of any kind is difficult to sustain. It’s important to remember that however you choose to interact with everyone, you never have to make them feel better about your HS.

We are constantly emotionally processing

On to the scenario with the friend who expects you to bounce back from hidradenitis suppurativa as if you have a short-lasting illness: this is a really sort of complex situation too, though it may seem simple at the surface. With chronic conditions including HS, we are constantly adjusting our expectations for life. Some of the things we go through, like giving up favorite clothes, or beach activities and swimming, or working out at a gym, or going on long hikes, or being intimate with a partner, or retaining employment, can all bring on bouts of anxiety and depression.

Having someone demand to tell them that we feel better because we went to sleep the night before isn’t at all realistic. We are constantly emotionally processing our lives and changing our goals. It’s difficult to justify to an outsider (friend or family member) that we don’t feel fresh and restored after a night’s sleep. Our lesions don’t magically disappear overnight. And if we put on a happy face, our symptoms don’t immediately disappear. It’s best to stop the toxic positivity before it becomes too much of a habit for either of you so your friend or loved one understands that chronic disease means chronic disease and all that entails.

The hero complex

Last but not least, the hero complex can be a little difficult to navigate. This is another one where others mean well, and they tell you how strong you are, but then they finish by proclaiming that you are so strong, you can’t possibly be weak – in any capacity. Really, it’s not always easy finding doctors who are well-versed in HS. To have to search for a new one after just getting done with surgery is incredibly stressful. Even if surgery wasn’t a factor, being forced to find a new doctor is still upsetting. This doesn’t feel like a time when you can nod your head and agree that someone will just show up and the stars will align. What can you do in this situation? Remind everyone you are human, with human needs and emotions. Once placed on a pedestal, it’s almost impossible to remain up there. Let’s operate on a level that is more realistic for everyone.

As you navigate toxic positivity, there is no need to point it out and shout, “Hey! That’s toxic positivity!” It’s a lot more important to identify the issues and work through them with the people that matter to you the most. If you would like a more objective perspective, I encourage you to seek out counseling. Universities across the country are offering free or greatly reduced rates so the general public can receive counseling through their graduate programs. The graduate students are monitored by the program’s faculty to ensure the patient is properly counseled. If counseling isn’t your scene, that’s okay. A little self-awareness goes a long way in breaking patterns.