To the People Who Won't Accept There Is No Cure for My Illness


Here’s how the conversation usually goes: you ask if there’s a cure for what ails me. I tell you the truth: No. There isn’t. There’s no magic pill, or special diet, or supplement from a late-night infomercial, or wizard of a doctor who can resolve this. And that’s anathema.

All at once, we’re arguing. I must be wrong, you say. I’m not motivated enough. I could do X, Y and Z if I just tried. I am giving up. I don’t know that it’s incurable, or that I will end up with the side effects I’ve mentioned. You have a rejoinder for every single fact I try to tell you. And by the end of the phone call or visit, I have given up: on being able to trust that I can speak openly with you.

Let’s be real: when a friend or loved one tells you they have an illness that will never go away, it isn’t an easy conversation. When they tell you that said condition may – or will – eventually kill them, it can be terrifying.

 

But we need to talk about it without being constantly debated, friends. Really.

The idea of incurable illness itself doesn’t compute a lot of the time. In our society, many people seem to genuinely believe that being sick means that you are either going to a) get well soon; b) die quickly. Having a condition that lingers and disables you for decades, or one that takes you on a progressively downhill journey until it kills you, isn’t congruent with those beliefs. And let’s not even get started on the concept of good days and invisible illnesses – if you look physically “healthy” or have had a day of fun, many people think your illness has magically evaporated.

Thus, for a lot of people, it seems it’s easiest, and most comforting, to pretend that incurable illnesses aren’t real. That their loved one is merely exaggerating or being dramatic. That what they’re telling you just isn’t true. That you’re not potentially going to lose someone you care about or see them engaged in a seemingly endless maelstrom of pain and illness. The five stages of grief are real, and if you care for someone with an incurable illness, you may very well need to go through that cycle of denial, anger, bargaining, depression and acceptance yourself.

Here’s the thing, though: your response may mean the difference between losing your loved one now, or later. I know it’s hard to deal with this, but it doesn’t go away if you ignore it. It just means your loved one might go away when they stop trying to confide in you.

Having an incurable and/or progressive illness can be very frightening. If you’re scared just hearing about it, imagine how we feel, living it. We might desperately need and want our loved ones to hear us and be present – to keep from abandoning us in our strange new wilderness. Wouldn’t you want the same?

When loved ones fill our conversations with denials or platitudes, they might think they’re being encouraging or supportive…but their words make it clear they’re just not listening to a word we’re saying to them. And that’s not a great feeling. After a while, one becomes accustomed to the greatest hits:

“You don’t know that.” Guess what: actually, I do know this happens. Am I saying it’s going to happen to me? No. I’m saying it’s theoretically possible, which it is, so give me a break. Stop acting like I don’t know about my own condition, ‘K?

“That won’t happen to you.” This is a remix of “you don’t know that.” There’s some ridiculous belief that if you discuss the possible outcomes of your condition, you’re expecting those things to happen to you instantly. If I mention that a lot of people with my illness get specific types of cancer, that doesn’t mean I want that cancer, that I believe I have it, or that I’m expecting it to show up tomorrow. I’m mentioning a possibility I have to be vigilant about.

“You’re giving up.” I love this one. Really love it. Except I don’t. I’ve heard it when I’ve mentioned there’s no cure, and the most I can hope for at this point in time is stability.

Most of my doctors have leveled with me on this point: stability is a noble goal. We don’t expect things to improve significantly, but we’ll do whatever we can to keep them from getting worse. On my life’s chess board, I’ve lost most of my pawns, both rooks and a knight. But I still have the other knight, the queen and the bishops, and they can still hold off a checkmate if they land on the right squares. That might not always be the case, though.

When there’s no cure, there’s no cure. Say it with me: There’s. No. Cure. It’s not about giving up. It’s not “listening to whatever the doctors tell you.” Believe me, I’m checking their work and reading the medical and professional resources myself. It’s about facing reality.

Would it be awesome if some hardworking researcher found a cure, or some viable long-term maintenance strategies tomorrow? Yep. Has it happened with other illnesses? Sure. Does holding out hope for a cure help some people? I’m sure it does.

Is it likely? Well, here’s a little game for you: Google some random chronic illnesses. Let’s start with lupus, Ehlers-Danlos Syndrome, RA and fibromyalgia. Go to NORD’s website, too. Now count the number of conditions that have cures, or even reliable, safe and effective treatment options that work for most patients. Go back on Google and look for patient anecdotes on how difficult it is to be diagnosed, much less actually treated by an expert. Report back to me. Yeah. That’s where we are, friend.

It’s not “giving up” if I’m not sitting there singing, “The sun will come out tomorrow.” I’m obviously still here. I’m learning about my illnesses. I’m getting on with life as best I can. But I’m not going to delude myself by ignoring where things currently stand for me.

“Think positive.” Oh, no, you didn’t. We’ve been through this before, darlings. You seem to think that saying something has no cure shows some level of pessimism, but it’s just the truth. I could smile all day like the Cheshire Cat, and that would still be the case.

Would you prefer it if I lied to you in the interest of putting a “positive” spin on things? I mean, sure, I could tell you everything’s fine, and there’s a readily available cure. I could refrain from mentioning my illness to you altogether. Hey, if I’m not entirely comfortable with you, that’s what I’m doing already. However, if I’ve actually leveled with you on this, it means I trust and respect you enough to let you know exactly what’s happening with me. Please don’t throw that back in my face by accusing me of not being “positive” enough for your liking.

I’m not expecting my loved ones to immediately smile, nod and be perfectly at ease with my illness. Please tell me if you need some time to process what I’ve told you. Ask me to explain things more completely; I don’t mind doing it. Let me know if you’re afraid or having trouble with it. Go home and meditate on it (I’m not being facetious; it’s a valid option). Take a walk and think it over. It’s OK. Really.

But don’t argue with me. Please. Just don’t. Don’t pretend you know my illness or current situation better than I do. Don’t refuse to believe me, or to understand the meaning of the word “incurable.” It won’t change anything. I need to be able to tell you what’s going on in my world without being dismissed or debated.

Believe in me, and be present. It’s real and it’s happening to me, whether you accept it or not.

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Thinkstock photo via panic_attack.


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