I’ve been getting to know some amazing spoonies on Instagram lately. I’ve found that those with chronic illness appreciate the questions I ask because it invites them to share their common frustrations and concerns while also connecting with others like them.
I’ve decided to turn some of their insightful responses into blog posts. Articles researching how to treat a chronic health problem can only satisfy one type of longing spoonies* faces every day.
True validation is the second longing, and it can only come from connection with others.
If you are a healthy person, and you’re not sure how to support a person with chronic illness, here are 3 things they absolutely need you to do (as told by real-life spoonies).
(Note: Some quotes have been edited for length and content.)
My original question: “How can someone best support you in your chronic illness?”
- “By regularly reminding me they are still here for me.”
This is a very important way to support someone with chronic illness, yet it can be easy to forget. We all have limited attention spans, so it’s hard to keep one thing or person in mind for a long time no matter how important they are to you.
If you have a friend with a chronic illness, you may have asked them to come out with you a few times, been turned down, and then stopped trying altogether. You assume that their answer will always be “no”, so, why bother, right?
Secret: People living with chronic pain still want to be asked and included, even if they have to keep turning you down due to their illness.
If your spoonie loved often turns you down for trips out, try a different approach. Offer to go to them for a visit. At the very least, keep texting and calling to let them know you are still there.
Spoonies often feel like a burden to others, which is why they don’t often reach out first. Take the time to remind your loved one that you are still there for them in whatever capacity they need.
- “By believing me without needing to see proof that I’m sick.”
Hands down, there is nothing, and I mean NOTHING more critical to supporting a person with a chronic illness than believing they are sick. Not all disabilities are visible, and a chronically ill person is still capable of having good days, and that’s when you’ll see them out and about, behaving like a “normal” person.
When this happens, you may be tempted to think the spoonie in your life is exaggerating their illness, but this is not that case. Chronic illness has its ups and downs, its good days and its bad days, and there’s a lot going on behind the scenes that you can’t see.
So, when somebody tells you they’re sick, believe them. Also, unless you truly want to educate yourself about the person’s condition, don’t ask to see proof!
Tina: “I just found out I have cancer.”
Rhonda: “Oh, my God! Is there anything I can do?”
Tina: “I just found out I have fibromyalgia.”
Rhonda: “Really? Did your doctor give you your diagnosis in writing? Can I see it?”
If that second example made you cringe, you can appreciate why asking for proof of anyone’s illness is in poor taste (not to mention insulting).
- “By listening and trying to understand.”
I cannot overstress the importance of just being there and listening. You may be tempted to give advice (I’m quite guilty of this) or try to “fix” or even minimize the problem, but resist the urge. Listen first.
Give your spoonie loved one your complete attention and try to put yourself in their shoes. Besides, they may have already tried what you’re about to suggest and cutting them off mid-story to tell them about it may make them retreat even further into themselves instead of feeling you are a safe person to open up to.
As a healthy person, it’s not always easy to understand chronic illness, but almost every healthy person has been sick with the flu, bronchitis, and other illnesses that lasted for several weeks to a month.
Now, imagine feeling like that every day.
Learn more ways to support and understand your loved ones with chronic illness by reading these articles:
*The term “spoonie” comes from “The Spoon Theory” written by Christine Miserandino, where she compares a drawerful of spoons to units of energy.