Why Vocalizing Your Doubts About Your Loved One's Illness is Hurtful

I’ve had debilitating migraines, for lack of a better word, for years now. I say I lack a better word than migraine because I feel there’s something much more severe going on in my neck that may be causing migraines as a secondary issue, but that’s not the main problem. I had migraines, bad ones, before I became “super” sick. But these are much, much worse. They begin more with neck pain that then radiates up, turning into a headache and then a migraine from you-know-where.

I’ve had lots of tests, tried lots of medication, chiropractors, myofascial release, among other things, and still these attacks have become more and more frequent. Long story short, I had a specific test done that required a four hour round-trip because we thought we finally knew what it was. And of course, negative. Nothing showed up on the test.

But what hurt me even more than finding out there was nothing found was a comment someone close to me made. I was venting my frustration, and I said, “These aren’t migraines, I just know they’re not,” to which this person replied doubtfully, “How do you know?”

Honestly, yeah, it probably doesn’t seem earth-shattering to most people.  I know it wasn’t meant with malice, and I’m not mad, but here’s the reason it hurt: this person has seen me suffer from these “migraines” for a long time now. They’ve seen them get worse, they’ve seen me throwing up because of the pain, they’ve sat with me in the emergency room when I couldn’t stand the pain, and they know that even the medications from the ER only took the pain down to a more bearable eight from a 10 on that handy dandy little pain scale.

Just the doubt behind the question…It hurt my heart. I expect it from the people who don’t see me when I’m writhing in pain. I get that. And of course I don’t expect everyone close to me to be perfect all the time. I don’t know. Maybe my expectations are just too high?

I’m sure there are plenty of times that people think stuff like, “It can’t be that bad.” or, “The tests didn’t show anything…again.” I know those thoughts have to run through their minds. And I know it’s probably frustrating to see me disappointed when every test keeps coming back negative. Like I said, I’m not mad. I know it wasn’t meant hurtfully and was probably just frustration more than anything, or something not even really said with any intent behind it at all. This might seem like I’m overreacting to some people, but sometimes these little comments, even when not meant hurtfully, do hurt. Over time when these comments go unchecked, the pain from them adds up. I’m writing this just to explain why it hurt because I’ve never clearly articulated that before. I feel it would be more helpful to explain rather than to expect others to just understand why I’m upset about something. Communication is key!

There are a few reasons that I feel vocalization of doubt to a loved one with chronic illness is hurtful, and it seems to me that it can actually be dangerous to an extent in certain situations:

1. It makes me doubt myself. Hearing others’ doubt makes me think I must just be weak or dramatic. It makes me think I must be wrong about something being seriously wrong. Contrary to popular belief, those of us with chronic illnesses know our bodies better than anybody else. So many doctors and people tell me what pain I have, that you’d think we share a body. When I really think about it though, I don’t complain much compared to how much I hurt, and I only complain about pain when it’s severe. So for me to say I cannot live like this…That’s a big deal. There’s something serious going on, and I shouldn’t have to doubt myself. But hearing this doubt from the people that truly know and see how bad things are for me really makes me question myself when I shouldn’t. I put myself through extra pain because I doubt myself and think I’m just being weak again, and that I should be fine, so I won’t take my emergency pain medication or call in sick or something when I really need to.

2. There could be something very dangerous going on that would be ignored. If I listened to my doubt and the doubt of others’ and just gave up looking for answers, there could be something serious going on that could become much worse if ignored. Most of the time, there probably isn’t anything super serious or life-threatening, but why plant that seed of doubt when you should really be trusting your loved one who knows what they’re feeling? Why take an unnecessary risk and ignore symptoms? And in a situation like mine with this issue, I’m someone like many with chronic illnesses who deal with extreme levels of pain, and I’m stating that I feel something is very wrong. That’s probably not the time to let that doubt creep in and stop you from helping your loved one, even if it turns out to not be life-threatening. This point is relevant to doctors as well.

3. It makes me want to hide from them. Doubt makes me not want to tell people anything. I doubt myself enough, so an outsider’s doubt makes me clam up in an instant. I immediately feel as though I can’t tell that person anything because I must have already overstepped some boundary or been unreliable for them to be doubting me. I’ll stop telling people when I’m in pain or when I shouldn’t be doing something to the point of exhausting myself because I feel like I need to prove to them that I can be a reliable person who won’t complain. That way, if something else were to happen in the future, they may be less likely to doubt the reality or severity, because I’ve proven myself to be dependable. This is dangerous for me. I shouldn’t be working myself to near-collapse and possibly exacerbating the problem that they’re doubting I have because of their doubt. And I don’t want to hide from people. I really like having open relationships. I don’t feel the need to hold any part of myself back.

I’m sure their intention isn’t to create additional pain for a loved one if doubt it expressed, but hearing this doubt can cause extra emotional turmoil. They may begin to question themselves and the validity of their feelings, and it can cause them extra physical pain. They may hide their symptoms so there isn’t any more reason to doubt them, and they may try to ignore their symptoms, worsening them, if they come to believe they should doubt the severity of their pain.

I’m not asking anyone to hide their true feelings from us, I’m just asking that everyone would really take time and think about what you’re doubting and why before vocalizing it. I ask that you realize that your loved ones almost certainly doubt themselves daily and have likely had an internal debate about whether or not their pain is something significant enough that they should bother you with it. I ask that everyone remember that your loved ones likely only express their pain when it’s severe and when they’re genuinely worried about what could be causing it. I ask that everyone recognize that your loved ones are scared, and are turning to you for comfort and support in an incredibly difficult situation.