Things to say to a chronically ill sick person

And by all means this is a very important list, it will help you realized when you are being helpful and when you are not.

What not to say

• You don't look sick - most of us don't look sick, but our insides feel very sick.

• Well, you look great for having such and such - read above.

• Everyone has back pain - does everyone have constant, spine-severing pain that stays and never goes away even with rest?

• Well yeah, my body hurts too - well yeah, when you work 40 hours a week that happens, but when you are home doing nothing, does it hurt then?

• I'm sure others have it worse - whether this is a true statement or not, it's the fact you are not acknowledging how bad someone is suffering. We all suffer differently, but no one should be suffering at all.

• At least you don't have cancer - studies actually show those with Chronic Fatigue Syndrome actually have a worse quality of life than those with cancer.

  
  

  

  https://www.healthrising.org/

  
  

• Why can't you just go to work like the rest of us? - because the rest of us do not have debilitating conditions that will often cause them to get fired from a job.

• Work out, even some yoga will work - I hate when people say this, especially doctors, because it's really dangerous to say this to someone with long COVID, POTS, and CFS. The reason being is that we have an exercise or physical intolerance, often referred to as PEM, causing us to be bedridden or even hospitalized for doing such activity. This adds to the depression we already have.

• Just drink more water - most of us will only drink electrolytes which keep us highly hydrated.

• Lose some weight, that always helped me - It literally helps NO ONE when someone offers this advice. Losing weight does not get rid of all health issues. In fact, my health issues didn't start until I lost 100 lbs. That's because my health conditions are not weight-related, basically, not caused by poor eating habits or lack of exercise. Not every single condition in the world is caused by this; some are caused by viruses, some are genetic, and so on.

• Why dont you ever want to go out and do anything,? you ruin it for everyone else - Because going out cost me all my energy. For example, we go to a park, I have to calculate the drive which also cost energy(even if you are a passenger) Calculate your medication schedule, which sometimes means you need to have food at specific times, being around

  a lot

  of people in weather that most likely isnt well tolerated with your conditions, and alot of time walking. The reason we dont go out is not because we dont want to, because trust me I would love to have some fun, but it cost more than I can give most times.

  
  

  What do say instead

  • How are you feeling today? - shows concern and general kindness and consideration.

  • Are you feeling up to going to so and so? - read above, it also shows that you are aware and empathetic when it comes to decision making with a loved one with chronic illness.

  • It's okay to sleep later today and not push yourself - This to me is a gift when I hear it, and I typically have to tell myself this when I'm really tired.

  • The dishes can wait - saying this shows that you are aware we have responsibilities but are so tired sometimes it's just too much, and it's general care that shows.

  • Do you need to sit? - saying something like this, or offering food and water, is so sweet and considerate. I have a best friend who always asks this, and sometimes I'm like, girl, I'm fine. But honestly, I'm glad she does.

  • Let me carry that for you, please - offering to carry anything at all is extremely helpful to us. I can't lift over 5 lbs, and you wouldn't believe the stuff that weighs more than that.

  • We don't have to go anywhere today, let me come over and sit with you in bed - this is huge. Leaving the house causes a lot of overstimulation and pain. Sometimes just sitting home with a friend who comes and talks to you to hang out, even if you don't have the energy to talk, they still just want to be with you, is awesome because it shows that your company is more important than anything.

  • Would you like me to go to so and so and get that for you? - yes, I had to learn how to say yes to this. I know anyone who says this means very well and knows how hard it is on you and cares about your health.

  • I understand if we have to reschedule, that's totally fine - My other best friend has POTS, so we always get each other, but our other friends in our group also do too by saying this when we are in the midst of a flare-up.

  • Would you like me to come/drive/accompany you to the doctors?- Yes please it always help to have extra support and someone who may asks questions on your behalf if you forget, it also helps to let the doctor know when your sick friend is showing worsening symptoms, we don't always realize when we do

In Conclusion

This wasn't meant to make anyone feel bad at all; this is to help others understand how they can actually help someone who is sick. Sometimes we say things not realizing maybe it wasn't the best choice of words, thinking maybe we helped them, but actually, more than you'd want to think, it's usually not the case. For me, it makes me feel defeated, helpless, and alone when I'm not being acknowledged, or my pain isn't being taken seriously, nor is my fatigue.