I'm Fine
When I’m asked about my chronic illness, I become matter-of-fact. I defer to facts and data over my own experience and feelings.
When I’m asked about my chronic illness, I tell them that trigeminal neuralgia (TN) is a rare chronic facial nerve pain condition. I say that there is no direct treatment or cure. I say that the medical treatments used are meant to treat other neurological conditions, but that these medications don’t completely disappear the pain. I say that the side effects can be intense.
When I’m asked about my chronic illness, there are times when I feel like I’m still not understood. Being in constant pain is inconceivable enough that I can often feel my audience’s discomfort and suspicion. Unless you experience or even witness it, it’s hard to explain what TN—or any other chronic condition—does to the body and spirit.
A fine balance
There are times, though, when I don’t want to answer questions, when I feel less than patient and gracious. I don’t want to feel like an oddity or medical curiosity. I don’t want my illness to supplant who I am as a person. So it’s easier to say “I’m fine,” when asked “How are you?”
Who knew that such a seemingly benign question could trigger so much internal conflict? I don’t want to lie about how I am. If I’m having one of my better days, I don’t want a good day to give the mistaken impression that I’m improving or “cured"—not because I want the sympathy, but because I’m acutely aware of how many people living with invisible, chronic illness struggle with being taken seriously and believed. I don’t want to contribute to that paradigm in any way.
But if I’m asked how I am on one of my worse-off days, I don’t want to be pitied. I also don’t want to be seen as a bore.
That’s why I may respond with the unassuming, non-descriptive “I’m fine.”
What “fine” actually means is that I’m still in pain and doing my best. It means that I’m fighting to maintain a positive mental attitude as much as possible, but there are moments in every single day when it feels too damn hard.
There are things I wish I could say instead of “I’m fine.” There are questions I wish others would ask that aren’t necessarily about my condition but more specific to my experience. Those are the answers I want to mull over and share.
Thought but often left unsaid
If I was open, honest, and frank about what my life with chronic illness is like, here’s what I would want you to know:
I’ve forgotten what life felt like before my diagnosis, even though I’ve lived most of my life without TN.
I’m scared that my health will be further compromised—either because my condition becomes more painful or because I develop other conditions—and that will decrease my overall quality of life.
Even when I smile or laugh or talk, I’m in pain. In fact, all those things are common triggers for amplified TN pain shocks.
I often minimize how I’m feeling to prioritize someone else's comfort over mine.
I can be both jealous and in awe of how healthy, more able-bodied people get so much done in a day while I struggle with the bare minimum.
Chronic illness isn’t the center of my life, but it affects every part of my life.
I feel bad about how my memory and concentration have been adversely affected by pain and medical side effects. I forget things easily, like an idea I just had or texting a friend.
I’m afraid that my friends will stop including me in their plans—even socially distanced ones—because I’m often unable to participate or need to reschedule.
I’m afraid that I’m a burden on my family and friends.
If I spend time with a loved one today, I will be depleted tomorrow.
If I push myself too hard today and put too much on my agenda, I will pay a higher price in pain and fatigue tomorrow and the day after (and even the day after that).
I’m ashamed to ask for what I need from most people in most social situations because I don’t want to be seen as an inconvenience.
When someone tells me they have a headache or a head cold, I can get frustrated when they don’t take steps to take care of something that can be easily remedied.
See all of me
So much of what makes living with chronic illness bearable is connection. When it comes to how I interact with the world and how the world interacts with me, here’s what I wish for:
If they haven’t already or need the reminder, I wish the people in my life would take the time—just a few minutes really—to read about TN (or migraines or IBS or neuropathy or any other condition I live with), out of consideration and empathy.
I wish people understood that because I’m always in pain, I have less energy than I did pre-diagnosis and tire easily. I won’t necessarily be able to do what I’ve always done.
I wish people wouldn’t assume they understand my experience because they’ve had headaches or a toothache before. That pain is temporary and relatively easy to remedy. Living with TN or migraines is more complicated.
I wish people wouldn’t suggest alternative remedies, yoga and meditation, and positive philosophies as cure-alls. I have tried alternative remedies, I do meditate regularly (and yoga is hard on the neuropathy in my hands and forearms), and I work to have an overall positive outlook on life. These things may improve my quality of life, but they haven’t lessened or cured my physical pain.
I wish people were more mindful about what they say, even if what they say is said with the best of intentions. Oftentimes, it’s just downright dismissive and hurtful.
I wish people wouldn’t compare their experiences to mine to the effect of devaluing their own stories and equating me to my illness. I’m still very much interested in life beyond illness.
Serendipity
Despite the challenges, people still surprise me with how they relate to me and my health. I’ve learned that the “small" things are not so small after all:
I have a wonderful support system, but the people closest to me continue to surprise me with their unwavering love and support.
I have been asked incredibly kind, insightful questions about my condition and my experience. This proves that kindness and compassion are alive and well.
I have received lifestyle tips and encouragement from online readers and friends in the chronic illness community. This has made me feel seen and heard in a deeper way than I imagined.
This is really about you
I feel a responsibility to elevate awareness of TN, chronic illness, chronic pain, disability, mental health, and other invisible conditions, so that more people can practice kindness and compassion for the invisible battles people fight everyday.
If you are the family, friend, co-worker, or neighbor of a person who lives with chronic illness, I want you to know that we don’t always want to talk about our illness, but we want you to acknowledge that it is a fact of our life experience, like our eye color or our favorite comfort food.
It’s actually the simple things that can make all the difference. Pay attention to different experiences and how you can be supportive without having to be invasive. Ask sincere questions and listen. Most of all, remember that we are not our illness. We live with illness. We are still complicated, interesting, delightful human beings beyond our health status.
If you live with chronic illness, I want you to know that it’s okay if you feel frustration, anger, or resentment in the face of questions you may be asked about your health. Health is complicated and how we feel about it is nuanced. It has layers that you are under no obligation to explain to others, unless you want to. You can choose how to engage with others and what behavior you will accept from them.
Practice telling people what you want them to know about you and your illness, how you want to be treated, what does and doesn’t work for you. Practice advocating for your needs and living within your energetic means. Honor your limitations but never forget that you’re so much more than them.
