Why We Need to Talk About the Fear That Comes With Chronic Illness

I’m scared. I feel like I often shy away from talking about fear, even though it’s probably one of the most prominent and influential emotions I experience at this point.

I don’t even really know where to begin writing about my fear. I’m afraid of everything.

Being chronically ill basically means you have little to no stability in your life, other than maybe consistent doctor’s appointments, needle sticks, and hospital visits. People don’t realize that health is the foundation on which we build our lives. Sure, there are other things just as essential, like shelter, food, and water, but a loss of health can also mean a loss of means to obtain or retain any of these things as well. Losing your health can cause you to lose everything. And people take it for granted so much!

But my point is that everything about my health is so uncertain all the time that it creates a great deal of fear. I can’t tell you what I’m going to feel like from one minute to the next, let alone how I’m going to get a full-time job, pay off my school loans, start paying my own medical bills, and keep myself alive in the future.

The fear comes from the lack of stability, reliability, and control – from the unknown – which seems pretty rational. I think that’s where a great deal of fear comes from, and there’s an obscene lack of predictability when it comes to chronic illness.

As a coping mechanism, I spend a great deal of time denying or suppressing the reality of my situation. I don’t think I’d be able to function on a daily basis if I didn’t have this coping mechanism, the fear would be too overwhelming. It can be limiting at times. I’ve mentioned hiding how severe my illnesses are as a survival mechanism to make others comfortable and to prevent judgement from others, but it’s also to help me get through the day without being completely debilitated by anxiety and panic.

The reality of my situation is that I’m sick… really sick. The reality is that there’s not much anyone can do for me. The reality is that the diseases I have are chronic, progressive, debilitating, and incurable.

And it doesn’t matter how long you’ve been sick, being sick and in pain is still terrifying every second of every day when you really think about it. For example, I might pretend like dislocating things is whatever and a normal occurrence (which, it is a frequent occurrence), but it actually still scares the crap outta me every time it happens because bodies aren’t supposed to do that! And being on chemotherapy, yeah I’ll say, “It’s a low dose,” and to try to play it down, but it’s still pretty darn toxic at any level and you still get all the scary side effects. Then getting shots in my back, well, I’ve had so many at this point, I pretend like I’m not scared, but who the heck wants a needle stuck in their back and who in their right mind is gonna be calm thinking about that? Even just my everyday pains and symptoms are still scary because I know that there is something seriously wrong just by the way I feel, and then when they give you names for these symptoms that are these horrible diseases that are going to be with you forever… it’s a bit overwhelming!

Not only are the symptoms themselves terrifying, but then you begin to think… what if you never feel better? How are you supposed to live feeling like this forever? This isn’t living, it’s surviving.

You can suppress the fear for a time, but then a new symptom starts, you get a new diagnosis, you randomly have a flare-up or the depression comes back, all that fear comes spilling over again. Sometimes I’ll just have a hard time doing something easy that I know I struggle with, but it’ll hit me one day that I shouldn’t be struggling like this and reality smacks me in the face again.

I think being afraid when you’re chronically ill is extremely logical. There are a lot of scary aspects of being ill and you lose a lot of stability that healthy people are privileged to. I think the fear that comes with chronic illness is something we need to talk about more and something we need to feel we can express to others.

Because fear can eat you alive. It’s insidious in its ability to always make you think the worst is what will be. And honestly, it seems like there are a lot of times where the worst possibility has ended up being my reality as far as my health goes. But the worrying before knowing, the building it up in my head when I keep it all to myself, still does nothing but make my emotional and oftentimes my physical pain worse. It does nothing to change the outcome. All it does is cause more suffering beforehand; it does not change the future, because with chronic illness and with life in general, a great deal of the future is beyond our control.

Often, at least in my experience, when I finally get to the point that I open up and talk about it, the fear loses its power. I know, I know – easier said than done. But it’s true. Sometimes even just writing things down helps me. Just getting it all out of my head gives me a certain kind of release, and I feel that we need more of that and that everyone deserves an outlet.

So if you’re a loved one of someone with a chronic illness, try to remember that what they’re going through can be very scary. Even if they’ve been living with their illness for a long time, being sick is still not a fun thing. Just being there and listening is sometimes the best way to help. Gently encourage them to come talk to you when they’re ready, reassure them that it’s OK to feel what they’re feeling, and that they’re going to be OK no matter what. Remind them that you’ll be with them through anything that may happen.

If you’re chronically ill yourself, don’t beat yourself up for being afraid and don’t hold it all in. I know that the fear can be debilitating if you let yourself really think about it, but when you feel it start to become overwhelming, talk to somebody about it. Or start a journal. Or write for The Mighty! Just don’t let it run your life. The fear makes total sense and I’m sure it will never be completely gone, but gently remind yourself that it will not change things. Sometimes it’s almost comforting in a strange way to recognize that things are beyond your control. It can relieve a lot of pressure.