Please, Stop Saying, “But You Don’t Look Sick”

And three other things you need to quit telling the chronically ill

I can see the wheels turning as my friend tilts his head to one side. There’s some concern in his eyes, yet I can also see a bit of confusion.

I’ve just told him about my chronic illness diagnosis. With clenched fists, I brace myself for the words I hate to hear, “But you don’t look sick.”

If you have an invisible illness, you know how hurtful those words can be. Even if they come from a friend with good intentions, the words make you feel like you are dishonest, like you really are not ill.

Those are only a few of the words that I hate hearing. Written below are three more expressions you need to stop saying to those who are chronically ill.

Have you tried…?

If you don’t have a chronic illness, you may never understand what it’s like to live with one. When you care about someone who has a chronic condition, you naturally want to do something to help.

A word of caution here. You need to be careful that the information you are sharing is beneficial.

In addition to living with bipolar disorder, I have a rare genetic disease called Familial Mediterranean Fever. Most people in my life, my doctors included, never heard of this condition before my diagnosis. Yet, even so, some people think that they can tell me how best to live with my illness.

Cue the frustration here.

Yes, your suggestions for nutritious foods to eat or gentler forms of exercise could help for better overall health. After all, an improved diet and more physical activity are necessary for everyone.

More than not, and I hate to be the one to drop this truth-bomb, your words only lead to increased frustration. If you’re healthy, you are incapable of fully understanding the reality of life with a chronic condition.

If you’re healthy, you are incapable of fully understanding the reality of life with a chronic condition.

Asking me, “have you tried...” is often more upsetting than anything else. Typically, it means that I either have to explain to you why your suggestion won’t work or listen patiently while you continue to dispense worthless wisdom.

Almost equally irritating is when someone says,

My best friend works with a woman who has a cousin that lives with a man whose nephew once had...

The words may not be exact, but I promise you, they’re not far from the truth. Ask anyone with a chronic illness, and they’ll agree.

If you know someone that has my exact condition, especially if it’s someone you know well, then feel free to let me know. However, if it’s merely a case of you knowing someone who knows someone who knows someone else who has a symptom that is similar to one of my symptoms, that information has absolutely no value to anyone. Sorry to be harsh, but that’s a fact.

Does that confuse you? That’s the point. Your information from a friend of a friend is just as confusing. Usually, it will do nothing to help the person with a chronic illness.

Just because you once had a headache in no way means that you understand the intensity or duration of the headaches that a chronic condition can cause. Even though you sometimes feel a little light-headed when you stand up, that’s not the same as living with constant dizziness and nausea.

It’s great you want to relate to what someone else is experiencing, but please try to do so in a way that recognizes that you don’t fully understand.

Last up, please don’t ever utter this phrase again.

Why don’t you just push yourself a little harder?

Let me ask you a question, would you ask a man with no legs to try and run a marathon? Would it be kind to ask a blind woman to help you paint your living room?

Those thoughts may seem ludicrous, but they are just a hint of how unrealistic the question, “why don’t you just push yourself?” can be. In fact, that statement does harm in two ways.

The first way is that the question implies that a person with a chronic illness is lazy. It puts the thought out there that the only reason the sick person is inactive is that they’re unwilling to put in the effort.

That simply is not true.

The second problem is that by asking why someone can’t just push forward, it also invalidates the illness itself. The statement presents the suggestion that the sick person only suffers from a lack of motivation and nothing else.

Again, not true.

The Reality of Chronic Illness

While I cannot speak for everyone, I can tell you some of the things I experience daily. Dealing with Familial Mediterranean Fever means that my life, or quality thereof, can change in a flash.

For instance, there are times when I am out mowing the lawn feeling halfway decent. Then, suddenly, with no warning, my legs stop working. It’s as if someone flipped a switch. Each leg feels like it weighs about 500 pounds. I’m forced to sit down on the ground wherever I am. Sometimes I have to sit for quite a while before I can get up again.

Now, before I understood my illness, there were times that I did proceed to push myself. I waited until I had the strength to get up and then kept mowing until I was back at the point of collapse.

Rest, work, collapse, and repeat.

Let’s just say that’s proof that I’m not the sharpest knife in the drawer.

By pushing myself past my body’s warning signals, I made things worse. Often, much worse.

When I finally did make it back to the house, it was all I could do just to get my clothes off and take a shower. Then, invariably, I had to go to bed. The trade-off for pushing myself too far generally means several days of not being able to do anything.

So, why don’t I just push myself? Because it’s not worth the price. Exerting yourself past the point where you should stop is going to require several days of recovery.

Please stop asking that question.

That said, there are things you can do to help.

How To Help

Please don’t take the words of this story to mean that you should stop trying to help someone with a chronic illness. All of us need help, even those of us who are relatively healthy. What can you do?

Listen

First, be willing to listen. Most days, the thing I need most is simply to tell someone how frustrated I feel. I need to vent about the pain that kept me awake last night. I need to mourn the poor quality of my life with illness. Ears are needed and little else.

Accept our limitations

Second, try to accept our limitations. Due to illness, there will be times when we have to cancel plans last minute or may be unable to answer your call. Many days consist of me getting up, going to work, coming home, and going straight to bed.

Jealous? I didn’t think so.

My weekends are often spent resting so that I can endure the upcoming week and continue to make a living. If someone with a chronic illness can’t be with you as often as you’d like, please know that they are likely trying their best.

Recognize that we are more

Third, please realize that our identity is more than our diagnosis. Yes, I am sick, and most days are influenced in at least some way by that illness. However, that is only a part of me.

In addition to being ill, I’m a bookkeeper, writer, avid reader, and TV junkie. I love to cook, work in my yard, and hike. There’s a lot more to me than being sick, and that’s true for everyone else out there. Please keep that in mind when thinking about or talking to anyone with a chronic condition.

Forgive

Last, please try to be forgiving. Living with a long-term illness is a constant struggle. It’s like having a 100-pound weight on your back that you can never take off. That reality sometimes means that we may come across as negative or irritable. Please try to forgive us and accept that today is just a bad day.

There are lots of things you can do to help someone with a chronic illness. If you’re not sure what to do, please ask. In the meantime, for everyone’s sanity and happiness, please stop saying these four phrases.

Until next time, keep fighting.

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