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Two years ago this month, I was diagnosed with a progressive, untreatable, incurable disease. And that has really sucked in ways that I couldn't even imagine the day that I got that phone call from my doctor. But one of the most surprisingly shitty aspects of my diagnosis has been the reactions of my friends and family.
I've been around social media long enough to witness many an outpouring of support, love, and affection for cancer patients. I've watched friends form fundraising teams to "kick cancer's ass." I've even watched friends shave their heads in support of other friends with cancer. Naively, after I got my diagnosis, I expected a similar (albeit less intense) deluge of support. But, somehow, those same friends have largely remained silent in the face of my disease.
At first, I figured something was lacking in my relationships. I tried to strengthen my friendships and I even went out and made new friends. Yet, despite all of my efforts, the only place I encountered meaningful health-related support was among other chronic disease patients. As time went on, and my health worsened, I began to mourn the lack of support from my friends even more. So, I turned to other chronic disease patients and asked what their experiences were like. And, as it turns out, they were a lot like mine. Only worse. In fact, the sicker the person, the more horror stories they had to tell. Their stories ranged from friends denying that their illnesses existed at all to suddenly ceasing all contact. But everyone agreed on one point: "If they aren't sick, they don't get it. Don't even bother."
While I get that they don't "get it"—much like you don't "get" what it's like to be raped unless you've been raped—I still think it's possible to muster up some compassion for a friend without precisely understanding the intricacies of their experience.
While I don't "get" why my dad still seems genuinely surprised to hear that I have health problems or why my friends express sympathy over a spilled coffee but not my broken DNA, I can hazard a few guesses. I mean, I'm sure it sucks to know that someone you care about is very sick and there is nothing to fight, no teams to be formed, and definitely no cure that leaves me bald. The inability to treat or cure my disease (and many others) is one of the most frustrating aspects of it, and I suspect that my loved ones feel the same way. But pretending it doesn't exist is doing a massive disservice to the person living with it. You know—me. The sick one.
Despite the probably wise words of my friends with chronic diseases, I'm not ready to give up on the healthy world quite yet. I don't believe that you're incapable of treating me and my friends with compassion. Maybe you just need a little help. So, I've compiled a very unscientific list of five ways not to be an asshole to your loved one with a chronic disease.
1. Listen. It doesn't sound like much, but do you really listen for understanding or do you just listen to reply? Many chronic disease patients are routinely invalidated and dismissed by their medical providers, leaving them in extra need of support from loved ones. While you may not understand the medical jargon, or have any idea what it's like to be in constant pain, simply listening and validating the experience of your friend or family member goes a long way.
In general, I find that "I" statements often aren't an appropriate response to someone else's pain. I've worked hard to train myself to stop meeting others in pain with stories of my own health problems or feelings, and instead to respond with questions that are very "you" focused. A simple "How are you doing?" after a friend gets bad medical news goes much further than "I'm sorry," and opens the door for real communication.
2. Keep your "cures" to yourself. Unless you, too, have a chronic disease, please don't tell me how I can cure my broken DNA with essential oils, supplements, or a gluten-free diet. There is nothing more dismissive and invalidating than suggesting that simple lifestyle changes will cure my progressive, degenerative genetic disease. I use all of the above for mild symptom relief but they in no way alter my DNA or the course of my illness. So, unless you're MY doctor, for the love of God keep your helpful ideas to yourself.
3. Don't make my disease about you. Personally, I think that many people shy away from talking about my illness because of how it makes them feel. But that's bullshit. My disease is mine, and if you want to be in my life you need to find a way to cope with it. Is that hard? Probably. But avoiding the topic for the sake of your own feelings is making my disease all about you. And, trust me, you don't want it.
Likewise, don't try to co-opt my disease or assume the role of caretaker. My ex-husband commandeered my medical appointments and insisted on guiding my treatment plan. While he thought he was just taking care of me, what he actually did was utterly silence me in my own medical care. It might feel good to act as someone's caretaker, but ultimately the only needs you're meeting by doing so are your own.
4. Do something. It can be hard to ask for help when you have a chronic illness. But, the reality is that many chronic diseases are disabling. Mine certainly is. I struggle to stand upright much less do active things like cooking and cleaning. I would give my right arm for someone who was willing to help me with basic tasks once in awhile. Send over a cleaning lady and a freezer meal and I would love you forever. Not even kidding.
Of course, the difference between healthy caring and unhealthy "caretaking" is that the former is grounded in the needs of the person being cared for, with healthy and appropriate boundaries. So, if I decline your help, please respect that, too. Maybe I enjoy doing that particular task. Or maybe I'm just not ready to admit that I need help grocery shopping quite yet.
5. Don't compare your health to mine. Because so many chronic disease patients become strong self-advocates and gather a whole lot of knowledge along the way, we can be great resources for your medical questions. I've sent a fair number of friends off to doctors with a solid idea of what tests to request that later led to an accurate diagnosis, for example.
But, while I'm eager to share my knowledge with you, I need you to understand that my health problems are simply in a different league and not to try to draw parallels between your low thyroid and my multi-system cellular disorder. Unless the health ailments you suffer from are a progressive, disabling disease without a treatment or a cure, you do not understand. And that's okay. Hell, that's fucking awesome for you. But it's really not awesome for me at all.
I firmly believe that suffering is suffering, and I do my best to hear you even when your ailment seems very mild to me. As my health worsens, even the health issues I had a year ago seem mild so I understand how much perspective matters. But, I'm also very human. While I'm happy to answer medical questions and provide emotional support, I just can't be the one who texts with you all day about your thyroid levels. And I especially don't want to hear how your struggle to find the right dose of thyroid medication has led you to understand what it's like for me to live with an incurable disease.
This year, Rare Disease Day is being celebrated on February 28. While not everyone who suffers from a chronic illness happens to have a rare one, I do. So, if you have a friend or family member who struggles with a chronic illness, I urge you to take advantage of Rare Disease Day to remind you to pick up the phone (to text or Facebook message, of course, I'm not crazy!), reach out to your loved one, and ask them how they are feeling. Then, ask them what you can do to help. And do it.
Your friend will appreciate it more than you'll ever know.
