I'm Sicker Than You

I live in a world where most people have not heard of my chronic illness. In fact, because it is invisible, and unless you are intimately familiar with my moods and movements, you would have no idea I live with a rare chronic pain condition that channels 24/7 variegated pain throughout the left side of my face. 

Unless you live with chronic illness--and I hope you don’t and never will have to--it is near impossible to imagine constant discomfort and acute pain. It is difficult to understand that this pain is a consistent current—with frequent swells and waves—and my job is to navigate it to the best of my ability. 

By and large, the chronic illness community is full of empathy for its members. Through our stories, we cheer each other on. But there is a less generous side to our community that I’m learning about. Recently, I saw an Instagram post that denounced the unfortunate tendency of some people to dismiss the different symptomatic experiences of others who share their diagnosis. 

Though I keep negativity like this at arm’s length, I have witnessed various shades of this online—and it is dangerous. 

Diagnosis isn’t universal

One lesson that continues to be reiterated in my life is this: we don’t all experience a diagnosis in the same way. A diagnosis isn’t synonymous with a universal experience—it is a label and, like most labels, it is general. 

A diagnosis describes a grouping of symptoms. It does grant you entry into a community of people who at least in part share that grouping, but that diagnosis doesn’t automatically mean that you and others like you experience the same symptoms in the same way. 

There are nuances to symptoms—as well as medical side effects—that affect different people to different degrees. And the experience of that resulting pain and suffering is singular. 

Finding community

There is not a lot known about my condition. Soon after I was diagnosed with trigeminal neuralgia (TN) in 2017, I quickly digested most of the credible, readily available information and research on it. Because it is rare and affects a very small subsection of the population (still too large, if you ask me), there’s not a lot of investment being made into new research or direct medical interventions. 

This means that aside from my quarterly appointments and ongoing email conversations with my neurologist, I have turned to social media to learn more about my condition, specifically how others like me are living with it and what has made their lives easier. I quietly, invisibly, gobble up posts by other TN patients. 

It has been nothing less than cathartic to find out that I am not alone. When I read descriptions that exactly match the words I use to articulate my experience, I feel the bittersweet comfort of knowing I’m not alone. I’ve learned that the medications I couldn’t tolerate are tough even on those who are better able to withstand the overwhelming side effects. I’ve taken notes on the foods and habits that can help me mind my triggers. And I inhale the encouragement that is offered, all the understanding that helps me—and grants me permission—to put my health and wellness first.

Comparisonitis

I wish the story ended there, but it doesn’t. The dark side of people sharing their experiences online is that comparisonitis insinuates itself into even the most emotionally mature psyches. I have seen comments on well-intentioned posts that boil down to: I have this same condition and I’m experiencing so much worse, so it’s not possible that this person has it too.

As poisonous as these comments are, I can take a step back and see them for what they are: expressions of frustration and hurt. It’s a human reflex to to want others to hurt as much as we do—not because we wish others ill, but because we all want to feel seen and heard. We want our experience to be valued and that inherent value gives our pain meaning and even purpose. 

Chronic illness is a betrayal. It’s the cruelest trick that reneges on any promise of “normal” health when we blink our eyes open to this world. Instead, you have to contend with a so-called “new normal.” This takes time and the learning curve isn’t finite. That time is paved with grief, frustration, and hurt. So, you can understand why it feels almost personal when we see that others with the same diagnosis seem to have it “easier” than us.

Even though I am able to put such comments into perspective, that doesn’t make them any less dangerous. Because treating your diagnosis experience as gospel means that you are creating wedges between yourself and perhaps the only people who can help you find yourself within the illness paradigm. The empathetic people in your support system may see and hear you, but there’s a limit to it because they are not living in your body. However, despite any differences in diagnoses, your fellow spoonies definitely will see and hear you. 

This is not to say that the community you find on social media, for instance, is a cure-all. No, it isn’t. But it is a tonic. In your darkest moments, that community can remind you that you are not alone, that someone has been where you are and survived, and that will get through this, here, now. 

Not enough pain

There is a flip side to this. It is one thing to compare your experience to someone else’s and dismiss them. It’s another thing entirely to make that comparison and start dismissing yourself. 

There have been numerous times when I read the accounts of others like me and my heart is overcome with sadness over how much TN has fractured their lives. I see the stories of misdiagnoses, prohibitively expensive prescriptions, and failed surgical attempts. I see the stories of not being able to get out of bed, forget holding down an office job. Over time, I see what TN does to a person’s psyche. And I can relate to some of these details, but not all of the qualify my life. 

It is in these differences in experience that sometimes makes me negate what I go through, physically and mentally. When I see someone with TN experiencing more pain than I am, I feel guilty that I’m not in as much pain as they are at that exact moment when I see their Instagram post. I don’t know if it says something about me specifically that I feel guilty about not having enough or the “right” amount of pain for my condition. I’m willing to bet that I’m not alone in this either. 

Objectively, I know that there is no such thing as the “ ight" amount of pain. I know that pain is pain. And I live with a lot of it. And if I see someone else’s story—someone who is worse off--when I’m not feeling my pain as acutely as I will in the next moment, I can feel a momentary, twisted version of survivor’s guilt. But then the pain redoubles its efforts and I’m reminded that we’re all survivors on this island of imperfect health. 

I also know this to be true: just as I wouldn’t wish my condition onto anybody, I know that the people behind the stories I see online wouldn’t either. My guilt does nothing for them, just as it does nothing for me. The daily work of chronic illness has no space for that. It only has space for doing one’s best. 

Coincidence? 

One thing I never thought I would be thinking so much about is on this side of chronic illness is the role of coincidence. When I see the stories of others’ experiences, I wonder how much of their experience is a warning and a roadmap of what comes next for me, particularly when it comes to the onset of other conditions. 

Some of the most outspoken, generous people I see online who live with TN seem to also share other diagnoses. I see the same hashtags attached to these posts—like dysautonomia, fibromyalgia, and other neuralgias—and is what the future holds for me as well? I have Googled these conditions and other hashtags that come onto my radar. I dig deeper, trying to understand what they are and what links them to TN. 

But my research doesn’t turn up much because not enough has been researched. Right now, the anecdotal yet very real experiences of others would have me believe it’s all just a coincidence. 

This wakes up my fear and my rage.

This is really about you

I want you to know that there is no me who is sicker than you and no you who is sicker than me. Your experience with health is yours. Your experience with chronic illness is yours. Only you can understand how the nuances in your symptoms affect your body and quality of life. There is no one set of rules that says how you should be “sick.” 

I want you to know that the only advice that applies to everyone—those with chronic illness and their healthier brethren—is to listen to your body. Your body is wise and is always communicating what you need. Even in the midst of pain or other misfirings and dysfunction, you can detect when your body is asking for relief, for distraction, for rest. 

There really is no comparison between one diagnosis and another, or within the same diagnosis. There is a spectrum of chronic illness that is full of shades of grey. And the less that is known about a condition means that those shades of grey multiply and blend in messy ways. The scepter of illness, symptoms, and side effects play the sickest (pun totally intended) mind games. The best we can do is take care of ourselves and, hopefully, in generously sharing our experiences, take care of each other.