Recently, I spoke to a Topical Steroid Withdrawal comrade about Dupixent. Two distinct thoughts came up.
One, the Sword of Damascus.
As someone who loves fables and mythology, I needed refreshing on this story.
In a “tale as old as time”, Damocles was an attendee in Dionysius’ court. He looked at all the king’s riches, envious of what he had. He exclaimed to Dionysius that he wished he was as rich and fortunate, and that life must be wonderful being king. So, Dionysius suggested an exchange — for Damocles to rule. They switched places, Damocles excited for acquiring attention, gold, and delicious food. What he didn’t expect to acquire was the misfortunes of being king — the enemies, responsibility, and anxiety.
And hanging above the throne, in complete allusion, was a sword which hung by a thread.
Damocles soon realized that he did not wish to be king any longer, the burden too great to bear. That even all the wealth in the world could not sustain him in the face of those fearsome duties of being sovereign.
For us on Dupixent, it is much like having the Sword of Damascus swaying above our heads. As wonderful as life can be on the drug, it comes with its own terrors. It is not a trade without consequence.
Yet, we are sometimes treated as outsiders in our own camp because we choose to use a pharmaceutical drug, which transitions us to my second thought — that we are no longer welcome in the TSW community.
My comrade and I exchanged anecdotes, sad pieces of ourself and how suddenly we were looked at differently by others who used to embrace us fully. One woman told me she no longer identified with me as much as before, a tone covered in disappointment by my actions. For my comrade, she tried to speak about her new journey on another biologic injectable within a TSW group, but was messaged not to do so — completely censored simply for sharing. She wasn’t marketing the drug, just telling her story, looking for support. The moderator claimed that, because she was on a drug now, she was no longer going through TSW. Canceled.
I don’t think people, even within our community, understand the headspace it takes to test out a new drug for most of us. When the pain is so great or the mental anguish is too overwhelming, are we supposed to commit suicide in order to be accepted? Would it have been okay then to have taken the drug? Because at the end of the day, pain is not a medal. The more pain you endure does not excuse you to belittle someone else’s choices for needing a lifeline. In fact, at least in my own personal journey, reaching for Dupixent was lifesaving. Literally. I am strong-willed, but I know my limits and I had reached mine. Individuals on these drugs are massively struggling, often times in incredible need of love and support from the eczema and TSW community. To be shunned or seen as “giving up” is cruel. It is exactly the same rhetoric we fight against.
I have been on both sides of the spectrum. I have looked at those who have grabbed for the needle or pill too urgently as impulsive. The inability to sit with the discomfort. But it’s bullshit. In my first years, I had full family support and didn’t have to work. I was able to have freedom in my disability to function or fully take care of myself.
It cost me dearly. In the darker moments, I ruminate around my career and marriage. If I had taken the trial for Dupixent, could my life have turned out differently? Could I have still had a dancing career? Could I still be married? I will never know. So to label someone as ‘weak’ or ‘a disappoint’ or ‘an outsider’ for giving something a shot in assuaging their pain, is unfair. Perhaps we are hanging on by a thread, much like our marriages, careers, and support system. And until TSW is prevented, these are the hard decisions we will face.
We need to face them together.
Our paths will vary, our plights in accordance to the sentence we face, but we have to hold hands while trudging through the mud. Otherwise, what’s the point? Exclusion creates division, not unity.
I do not wish TSW on anyone. Neither do I wish the hard decisions on anyone. Whether you endure with zero pharmaceutical help, or go full throttle with a biologic or JAK, that is your choice. You are a part of the community. You are a part of the struggle. You are part of the brave family facing adversity.
So remember — life is short. Time is not promised. Health is not promised. And health is literally the only thing that matters most. Even above love I’d say. Your health weaves into every facet of your life. Hold it close to your chest. Support it as best you can.
Support each other as best you can.
You never know when someone’s thread is due to break.