Includes four ways you can help someone with a chronic illness to have a better life.
The confusion and concern in his eyes are obvious. I can see the gears in his head turning as he tilts it to the side. I brace myself for what’s coming next.
Seconds ago, I told him about my chronic illness diagnosis. While nearly biting my tongue in half and clenching my fists, I steady myself for his inevitable words, “But you don’t look sick.”
My friend cares about me, and I know he meant well. It was up to me to educate him about how chronic illnesses work and which phrases he needs to stop saying. Here’s a few of the things I told him to stop saying to the chronically ill.
What is an invisible illness? Simply put, it’s a condition without obvious physical symptoms. It’s easy to recognize when someone loses a limb or breaks an arm. There’s a tangible piece of evidence you can look at.
With mental illness and a vast majority of physical chronic illnesses, there’s nothing you can see to identify the disease. This lack of visible clues is why we call them invisible illnesses.
It’s not uncommon for one with a chronic illness to be smiling or even laughing while fighting back nausea or struggling with severe pain. Trust me when I say, most of us work hard to look healthy, so it’s not surprising if you don’t realize we’re sick.
However, once you know, here are four things you should stop saying to the chronically ill.
1. You Don’t Look Sick
If you have an invisible illness, you know how hurtful those words are. Even if they come from a loved one with the best intentions, the words make you feel dishonest and unreliable.
There can be a lot going on inside before you ever see anything from the outside.
Let’s take MS (multiple sclerosis) as an example. Two of my closest friends are battling MS. One is a young man in his early thirties. To meet him, you would never guess how much he struggles every day. He is fit and trim and almost always smiling.
Spend some time with him, though, and it won’t take long to see how he stabilizes himself by grabbing on to walls or door frames. You don’t need to be Sherlock to notice how he takes every opportunity to sit down because standing is too exhausting.
Yet, too many people miss these cues, some even to the extent of thinking he’s not sick, or at least, not very sick. They are wrong, and every time they say, “You don’t look sick,” it’s a new knife plunged into his heart.
In reality, MS is destroying his vital organs and slowly stealing his brain function.
It’s common for patients to look perfectly healthy and be battling a chronic illness.
2. Have you tried…?
If you don’t have a chronic illness, it’s impossible to know what it’s like to live with one. However, when you care about someone who is sick, you naturally want to help.
A word of caution here. Please be careful to make sure the information you are offering is beneficial.
Besides living with bipolar disorder, I have a rare genetic disease called Familial Mediterranean Fever (FMF). Most people in my life, my doctors included, never heard of this condition before my diagnosis. Yet, even so, once they know, many people think they can tell me how to treat it.
Cue the frustration here.
Yes, your suggestions about nutritious foods or gentler forms of exercise could help improve my overall health. After all, a healthy diet and appropriate physical activity are vital for everyone.
However, I hate to be the one to drop this truth-bomb, but most often your words only lead to increased frustration. Again, 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.
Unless you have the same condition, asking, “have you tried…” is doing nothing but increasing the aggravation of the one you’re trying to help.
Typically, it means they’ll either have to explain why your suggestion won’t work or listen patiently while you continue to dispense worthless wisdom.
I know you want to help, and that’s commendable, but this tactic is not working.
Next up in things to stop saying to the chronically ill is anecdotal information about unknown persons.
3. My colleague’s best friend’s college roommate’s nephew once dated a girl who had…
The words may not be exact, but I promise you, they’re close to the truth. Ask anyone with a chronic illness, and they’ll agree.
If you know someone who has the exact condition, especially if it’s someone you know well, then please feel free to share that information.
However, if it’s merely a case of you knowing someone who knows someone who knows someone else who has a symptom similar to one of the symptoms your friend has, that information has absolutely no value.
Sorry to be harsh, but it’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 does not mean you understand the intensity or duration of the headaches caused by a chronic condition. Even though you sometimes feel a little light-headed, it’s not the same as living with constant dizziness and nausea.
Again, it’s great you want to share beneficial information, but please make sure it is useful knowledge.
As bad as these first three phrases can be, there’s one more you especially should stop saying to the chronically ill.
4. Why don’t you just push yourself harder?
Would you ask a man with two broken legs to 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’re just a hint of how unrealistic the question, “Why don’t you just push yourself?” can be.
In fact, this statement harms in two ways.
One, by asking why someone can’t just push forward, it invalidates the illness itself. The statement suggests the sick person only suffers from a condition that can be resolved by increased activity.
That is not true.
Two, the question implies a person with a chronic illness is lazy. It lays the foundation for the idea that the person is only sick because they’re inactive or unwilling to put in the effort.
Again, not true.
The Reality of Chronic Illness
While I cannot speak for everyone, I can tell you a little about my daily experiences. Dealing with FMF means my life, or quality thereof, can change in a flash.
For instance, there are times when I’m out mowing the lawn feeling halfway decent. Then, suddenly, with no warning, my legs stop working. It’s as if someone flips a switch.
Each leg feels like it weighs 500 pounds. I’m forced to sit down on the ground wherever I am. Sometimes I have to sit for a while before I can get up again.
Before I understood my illness, there were times I pushed myself. I would wait until I had the strength to get up and then keep mowing until I was back at the point of collapse.
Rest, work, collapse, and repeat.
Let’s just say I’m not always the sharpest knife in the drawer. This pattern always produced negative consequences.
By pushing myself past my body’s warning signals, I made things worse. Often, much worse.
When I finally quit for the day, it took everything I had to take my clothes off and shower. Then, invariably, I had no choice but to go to bed.
The trade-off for pushing myself too far meant several days of doing nothing.
So, why don’t I just push myself? Why is that something you should stop saying to the chronically ill? Because it’s not worth the price.
Exerting yourself past your breaking point will require several days of recovery. Those are not fun days.
Please stop asking this question.
Now I’m going to get off my soapbox because I don’t want you to go away discouraged. While you should stop saying the phrases above, there are things you can do to help.
Give a Gift: 21 Best Gift Ideas for the Chronically Ill
How To Help
Please don’t take the words of this story to mean 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? Let’s consider four positive actions you can take.
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 in that moment. We need ears and shoulders but little else.
2. Accept our limitations
Second, try to accept our limitations. Because of illness, we may have to cancel plans last minute or may not answer your call.
Many of my days consist of getting up, going to work, coming home, and going straight to bed.
Jealous? I didn’t think so.
I often spend my weekends resting so 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 they are trying their best.
3. Recognize that we are more
Third, please realize that our identity is more than our diagnosis. Yes, I am sick, and it influences most days in at least some way. 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.
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 we may come across as negative or irritable. Try to forgive us and accept that today is just a bad day.
You care about your loved ones and want to do all you can to help with their chronic illness. That’s awesome. Thank you for being so kind.
In your efforts, please stop saying to the chronically ill things like these.
- You don’t look sick
- Have you tried…?
- My colleague’s best friend’s college roommate had…
- Why don’t you just push yourself harder?
Instead, try these things.
- Accept our limitations
- Recognize we’re more than our illness
If you’re at a loss of what to do to help, just ask. We’re happy to tell you.
All of us spoonies thank you in advance.
Until next time… Keep fighting.