7 Things People With Chronic Illness Want You to Say

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Things People With Chronic Illness Want You To Say

Chronic illness wears down more people than you’d think. Whether your friend suffers from migraines, multiple sclerosis, depression, or any other number of issues, they probably feel pretty misunderstood a lot of the time. This primer of seven things we want to hear is one way to be the best friend you can be.

That sucks.

Most people with chronic illness suffer in silence because people constantly respond to statements with a helpless, “I’m so sorry.” When people respond with this, my first response is to validate their feelings with “it’s not your fault.” They already know this. I already know this. The follow up of “well, it seemed like the best thing to say” makes me feel even worse. When people use “I’m sorry” to express sympathy, the statement seems more like something you’d say at a funeral.

I’m not dead. I’m not dying, well, any more than most people are. We’re all dying every day, but it’s not MS that’s killing me faster. I’m living.

I need to hear someone just say, “that sucks.” Because truthfully? It does suck. No matter what the “it” is, it’s definitely a higher level of suck than not having the “it” which currently sucks. This response works well when a friend makes a side comment related to a bad day or one of those “I’m out of spoons” comments you might see.

That TOTALLY sucks.

The daily problems associated with chronic illness range from medication side effects to insurance problems to continuous pain to a constant state of fatigue. It TOTALLY sucks.

When you’re responding, it’s imperative to stress vocally (or in capital letters) the word “totally.” None of this kind of thing sucks on a limited basis. Our illnesses aren’t going away. We’re not going to magically feel better in a few days like someone with a cold.

This response is one step above the regular “that sucks.” It’s perfect for those statements that go beyond our daily aches and pains. For example, one scenario comes to mind. Many people suffering from chronic illness have pooping issues. We might be constipated or having diarrhea. Sometimes, the bowel issues relate to our medications, other times to our specific illness. If we’re complaining that our butts hurt or that we’re stuck at home because of these issues? Now is a perfect time to insert the emphasized “totally.”

Duuuuude, that sucks soooo much.

The first thing to note about this particular version of the “that sucks” is the inflection. The long “oooh” in “dude” gives the statement an extra element of both realization and personalization. You’re focusing on the person in front of you and their problem. Next, it’s important to elongate the “so” because it doesn’t just suck “so” much, it sucks “sooooo” much.

These are the levels of suck that go beyond the daily and morph into the short-term continuous issues. For example, when a regular person gets a cold, the illness takes 3-5 days to run its course. For people with an autoimmune disease, this seasonal cold can take twice as long to run its course and more likely comes with a constant, low-grade fever. When we get sick, we get sicker and for longer than non-chronically ill people.

In these scenarios, we need people to not only acknowledge the suckage exists for us (“duuuuude”) but to recognize that the suckage is worse for us than others “sooooo”).

THAT is SOME suckage right there.

Let’s start here with the importance of visual or vocal emphasis. First, in this case, you’re responding to a specific event. Now, while I used the word “suckage” here, other words might fill the void better, but we’re a PG website. This response should be used in specific situations when some event or person has specifically upset your chronically ill friend.

For example, people with fibromyalgia often hear doctors tell them that they need to lose weight rather than that they’re ill. Another perfect example of a time to use this response would be when a friend has said that their insurance hassled them over medication coverage. Medications for chronic illness are often off-label uses. For example, both Provigil and Adderall help people suffering from fatigue. Since these are controlled substances not intended for chronic illness, some medication insurance policies refuse to cover them. Moreover, in the case of opioids, many people with chronic pain feel others treat them as drug addicts rather than recognizing how constant high or low-grade pain impacts their lives.

By focusing on the word “that,” you’re acknowledging either the actor creating the suck or the event leading to the suck. By focusing on the “some,” you’re taking into account that not everything is awful but that this is one level above other awful. In a nutshell, you’re focusing on the event and the level of suck rather than telling your friend you feel bad that this is happening to them. Trust me, we’re already feeling pretty horrible. We just want our horribleness to be acknowledged.

That sucks SO HARD.

For those not within the chronic illness community, which I hope is more than that are, I need to delineate the differences between “Duuuuude that sooooo sucks” and “that sucks SO HARD.” First, let’s look at the clipped nature of the word “so.” While the elongated “duuuude” and “soooo” earlier focus on the person and amount of suck, the emphasis here on the “SO HARD” focuses on the level of suck existing in the event. However, this clipped, shorter response compared to “THAT is SOME suckage right there” also focuses on a specific event while acknowledging that instead of “some suckage” this is epic levels of suck.

When do we use this one? Unlike the ongoing generalized problems like insurance, this response pairs well with a specific incident like a new symptom or a doctor’s inability to diagnose a problem. Migraines offer an example of a good time to use this one. For most people, migraines present in the temples. However, many people do not realize that migraines can also present in the sinus area. This means that someone suffering from a migraine that is in a new location may not realize they have a migraine and may think it’s a sinus infection. (This was how I ended up diagnosed with MS, by the way.) In this case, saying “that sucks SO HARD” works well because the person is experiencing a new pain (“that”) which is adding to their already stressful life “SO HARD”).

In these instances, the focus is not on the person or the new event but how much the new event is going to change the person’s life. In other words, now your friend is probably wondering about what other random, unexplained pains can change their life.

You don’t suck.

Our friends probably know we don’t suck, but oftentimes, we feel like we do. Chronic illness changed our lives. Perhaps we used to be the friend who’d go out with you at a moment’s notice. Perhaps we used to be the person to whom you could complain regularly. Perhaps we used to be the happy-go-lucky person with the optimistic outlook.

Chronic illness took that from us. Most of us remember the person we used to be. We remember listening to stories of breakups. We remember climbing playground equipment with our kids. We remember. We always remember. The ability to remember makes our new lives worse sometimes. We feel guilty when we don’t have the mental bandwidth to listen to the latest story of a breakup. We feel terrible about not running with our kids. We miss being the person we were before chronic illness took that from us.

We need to know that you don’t think we suck. We don’t need any emphasis on any of the words. In fact, you can best allay our guilt by speaking gently and assertively without placing more emphasis on any of the words individually. Focusing on the “you” only makes us think that it’s because you’re our friend that you’d say this, taking away the importance of the thought. Perhaps, we think, other people would suck, just not us because you don’t want to make us feel bad. Perhaps, we don’t suck, but we’re something else equally upsetting to our friends. We just need you to tell us, “you don’t suck.” Period.

I love you.

This seems no different than “you don’t suck,” at first glance. However, telling us you love us reaffirms our friendships. We miss you. We love you. We sometimes feel that because we’re out of touch, we’ve lost your love.

This response gives us the unconditional, emotional support we need. Our illnesses suck. The way they impact our lives often leads us to have more suck than others have. Sometimes, a thing sucks a lot in the moment. Sometimes, that particular thing is literally sucking super hard. Sometimes, it makes us think we suck.

We need to know that you love us no matter what. Whether we’re quiet or sleeping more, whether we’re the person you remember or want us to be, whether we’re complaining about things you can’t understand, we need to know we’re loved.

Sometimes, we feel like our changed lives make us less lovable. Sometimes, we feel like a burden to those we love. Sometimes, we just can’t love ourselves.

Tell us you love us. That’s really the most important thing we need to hear.