Since being diagnosed with trigeminal neuralgia (TN), my mom has been my emotional hotline. I have had more conversations with her — a wise, compassionate, retired nurse — about chronic illness and pain than I can count. Something she says punctuates each and every single one of those chats: “Pain is pain. No one can understand your pain except you.”
Pain is wholly personal
I take heart in those bittersweet words. When my mom says this, it reminds me that my experience is mine — no matter how many thousands of others share my condition, and no matter how many similarities there may be in our experiences, our pain isn’t exactly alike. I can empathize with the depth and breadth of anyone who has my condition, or anyone who lives with any sort of pain, but unless I am that person, I won’t know exactly what her experience is like, just as she won’t know mine. What then follows is that I am the best authority on my condition and body, and shouldn’t be afraid to advocate for myself.
This may seem obvious, but it’s not always easy to practice.
One side effect of chronic illness is how it brings to the fore other people’s lack of sensitivity, kindness and compassion. And not necessarily just strangers — I’m talking about people in your sphere of influence: family, friends, co-workers, neighbors, even health practitioners. You expect the people in your life to maybe not completely understand, but to still be respectful.
That is not always the case.
How can you hurt all the time?
Unless you know me very well, you would have no idea that I have a chronic illness. As with most chronic illness, it is invisible and doesn’t offer any social cues that something is “wrong.” But this doesn’t excuse some of the things that have been said to me since I shared my diagnosis with people in my life.
“It’s not like it’s chronic.”
“Just don’t think about it and the pain will stop.”
“It’s not like it’s cancer. You won’t die from this.” (I’ve heard this one dozens of times.)
“How can you be okay?” (A common response when I’m asked how I am.)
“How can there not be a cure?”
These things (and more) have been said to me and they hurt. These comments are inherently suspicious or accusatory. I understand that most people have never heard of TN, and I don’t expect people to know what it is, but I would hope that there could be a more gentle curiosity and compassion for my experience.
At times, this level of insensitivity has prevented me from putting my health first. And sadly, I have learned that too many people living with invisible illness are on the receiving end of such callousness.
In her guide “How to Live Well with Chronic Pain and Illness,” Toni Bernhard devotes a chapter to what people living with chronic illness hope others won’t say. Some of the most hurtful real-life examples are: “You just need to get out more often,” “I wish I could lie around all day and do nothing,” “You’re too young to be sick,” and “Maybe if you quit talking about it, you’ll get better.”
What people fail to understand, even those of us living with chronic illness, is that as bad as the physical symptoms are, shame makes everything worse. All the necessary lifestyle changes you make for the good of your health doesn’t dissuade others, or yourself, from questioning whether you’re trying hard enough, doing enough, exaggerating or just plain lazy.
In her powerful 2016 essay in ELLE Magazine, Esme Weijun Wang is spot-on when she writes about her experience with chronic illness:
“When I see women that I admire scoff at the idea of self-care, I shrink because I’m often reading their words on my phone while lying in bed, engaging in the most intense self-care that I can manage.
“Should things be just a little bit different, I’d be right there alongside them. After all, my work ethic and ambition haven’t gone anywhere, despite my dedication to doing nothing for hours per day. It’s my work ethic and ambition that call my “doing nothing” laziness; and laziness, or sloth, is cause in our go-go-go society for shame of the highest order.”
Like Wang, my ambition and work ethic are alive and kicking. There is still so much I want to do and accomplish in this life. But I’m not able to do it at the same pace or in the same ways as I did before the TN. This has been hard for me to accept, but at times, it has been even harder to communicate this with the people in my life who don’t understand the high pain price I pay for not putting my needs first.
For instance, I am unable to talk for longer than about 45 minutes before my pain intensifies. Let me be clear here: my pain is 24/7 and that’s with medication. There are two layers to my pain, so not minding my triggers will worsen the shocking pain attacks typical of TN. That’s one big reason I changed the way I work.
Being self-employed, I have control over my work, unlike at social gatherings. I find it more difficult and uncomfortable to advocate for my needs when I’m at a family occasion, for example. If I do, with rare exception, I feel like I’m letting everyone down or that they don’t believe me.
When you have to contend with understanding your new limitations, as well as the social interpretations and implications of your illness, it’s a virtual playground for your shame to strengthen its muscles.
Not my business, not my job
As you can imagine, others’ thoughtless behavior or inconvenient situations have stoked my resentment and anger. Sometimes, it still does. I resent people’s suspicion and how I feel too unsafe to do what is right for me. I’m so angry at the sometimes utter lack of sensitivity, kindness and compassion.
But this behavior has reinforced an important lesson I learned a long time ago: What other people think, or don’t think, is none of my business. If they don’t believe my diagnosis? None of my business. Suspicious of me? Again, none of my business. What actually is my business is to take the best possible care of myself so that I can wholeheartedly show up in the world.
In remembering this, I’ve learned an equally vital partner lesson: It’s not my job to make everyone understand.
This is about you
And that’s what I want you to know too. No matter what your health status is, it’s not your job to make everyone understand what that means. You share that information with the closest, most supportive people in your life, but beyond that circle, you don’t need to justify what your version of self-care looks like.
What will help you — and what I am still learning to do every single day — is to be patient, especially with those people who say hurtful things. A lot of the time, they’re not thinking before they speak or they’re poorly executing good intentions. If you keep that in mind, it makes it easier to forgive them, but don’t forget that perhaps that person is not someone who needs to be part of your support system.
Advocating for yourself is the highest form of self-care you can practice. It asks that you release any guilt associated with prioritizing your needs because doing otherwise is too expensive. This won’t make you arrogant or selfish; on the contrary, it will fill that proverbial cup of yours enough so that you have enough to share.
To drive the point home with another overused metaphor: Always put the oxygen mask on yourself first.
Note: This piece was first published on my blog on October 30th, 2019.