Chronic illness is similar to mental illness in it isn’t widely advocated for, it’s something many don’t understand or have much knowledge of and it’s hard to talk about.
I have suffered with chronic pain for 10 years. Let that sink in — I’m only 24 years old and I’ve spent a decade of my body fighting itself. It’s not fair and it’s hard, but believe me when I say I’m tough, and I can speak for those like me and say they’re tough too.
It’s enough to feel so ill all the time day in and day out, but there’s a lot more that goes along with being chronically ill. If you know someone like me, there are some things you can do to be a supportive loved one.
On that note, there are some things you never want to say to a chronically ill person.
1. "Feel better" or "get well soon.”
This is like telling someone with anxiety to relax. It’s just not that simple. Don’t get me wrong, this isn’t the worst thing you could say to a person with a chronic illness, but it isn’t the best either. There’s a real big difference in having a cold and taking medicine, drinking fluids and resting up until you’re well and being chronically ill. When you have any type of virus, medication and time will heal you. When you’re chronically ill, you’re sick for likely the rest of your life and nothing will cure you. While medication and other treatments may reduce symptoms, nothing will ever make a chronically ill patient “better” or “well.”
While saying these things may show you care, it’s more empathetic to say, “I’m sorry,” or “I hope your symptoms subside long enough for you to get some rest,” or “Is there anything I can do for you?” Simply try to understand and acknowledge you realize we are not going to “get well.” Your empathy will touch our hearts in a big way, trust me.
2. “Have you tried yoga? What about eating more fruits and vegetables?”
Believe it or not, neither of those suggestions are a cure-all nor even close to a cure-a-little-bit solution. Yes, eating healthy can help some people generally feel better. Yes, yoga or another form of exercise can help some people. However, it’s possible either of those things could make some chronically ill patients feel worse.
There are a lot of sicknesses along the chronic illness spectrum from fibromyalgia to Crohn’s Disease, and those two in particular can be worsened by exercise and diet changes. People with stomach issues have extreme sensitivities and some can’t eat certain fruits and vegetables. Similarly, those with fibromyalgia can greatly benefit from yoga but it can also cause more pain to some. I have a heart condition in which I cannot tolerate exercise, even the lightest forms of it. You never know what a patient may be suffering from and what could help or hurt them, and medical advice really is the last thing you want to offer unless you are a licensed professional.
3. “Are you sure it’s not just anxiety? It’s probably all in your head.”
Many chronically ill patients have been to every doctor this side of the Mississippi hoping for a diagnosis, had inconclusive tests and been told, “It’s probably just anxiety.” It leaves many of us feeling like it’s all in our heads and we’re crazy. I haven’t personally battled that issue because I have always known there is something physically wrong with me and refused to believe anxiety was all there was to it. While I was frustrated for nearly a decade having inconclusive tests and not getting a definitive answer, I knew for a fact one day doctors would find it. And they did. I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2017.
For us to be told it’s anxiety is disheartening when we experience so many symptoms we know are more than that. While anxiety is just as real and difficult to deal with, it’s different.
Whether a person has been officially diagnosed with a chronic physical illness or is still in the purgatory of searching to find what’s wrong, try to be understanding and accept there is indeed something physically wrong.
4. “But you don’t look sick.”
If I could count the times I’ve heard this, baby I’d be a rich girl. (I can’t let a whole column go on without squeezing in at least one Beatles reference, y’all).
Once a week I’m hooked up with an IV in my arm then an hour later I’m at work wearing a cute outfit with makeup on my face looking pretty well put together. You’d never know what I struggle with by looking at me. I’m generally in a good mood, although it’s not always genuine as most of the time I’m battling debilitating fatigue, an abnormally high resting heart rate and a handful of other things. However, I always have on a brave face because that’s just how I am. Like I said, I’m tough.
While I’ve only got about a year and a half on POTS and am still learning to function with it, I’ve got 10 years on feeling sick and am a pro on how to handle it at this point.
Some days all I can wear are leggings because my body hurts so bad and other days a sweep of mascara is all my bare face is getting, but most of the time I look just like you. My boyfriend has the privilege of seeing Weekend Santana, who may look like she has lost her hair brush, forgotten what makeup is and wears the oldest, rattiest — but comfiest — T-shirt she owns.
People who see me on a regular day assume I’m a happy-go-lucky, healthy girl in her 20s and that’s just not the case. It’s important for others to recognize chronic illnesses are very often “invisible.”
While I may not like to talk about my illness, I’m coming to terms with how important it is to be an advocate for those like me who struggle on a daily basis. I’m trying to speak out for those who don’t like to speak up for themselves. I want more people to understand what chronically ill patients face and I want more people to know how to treat those patients.
If you have a loved one who battles a chronic or “invisible” illness, hopefully if nothing else I’ve enlightened you. All you have to do is be supportive and empathetic and our hearts will swell. Most days we are battling ourselves as our bodies battle themselves, and a little bit of love and support goes a long way.
Santana Wood is assistant managing editor of The Outlook.