Here are a few things to never say to a disabled/chronically ill person (unless for whatever reason they have specifically told you saying these things is helpful to them in some way) These are things that make us feel dismissed, invalidated and a host of other unpleasant things.
Warning: spicy language ahead
These are in no particular order
- "You don't look sick"
This is not a compliment .
- "stay positive" or "Stop being so negative"
Sure a genuine positive outlook on life is generally a good thing. However, there is this constant pressure as a disabled person to be positive all the time even when severely ill and in constant severe pain.
Being positive or negative has no bearing on illness. I know people who are negative asshole jerks to everyone and sometimes they get better. I also know some of the most upbeat positive people and they don't get better or get worse.
Also stop blaming their "negativity" as a reason why they are still sick. This is false.
Often times healthy people will pull out the "stay positive" card as a means to silence disabled folks when they are just sharing their story/reality.
- " So and so has X condition and they are fine now"
So fucking what. Just because one person you know seems to be doing ok now doesn't mean everyone is magically cured/in remission. Remember lots of chronically ill/disabled folks fake being well because we live in an ableist society so you never really know how someone is actually doing. Often times we just stop talking about our health and pretend to be ok so we don't continuously get abused.
Just because one person who may or may not exist is doing ok with a similar illness doesn't mean everyone with that illness is just going to magically get better. That's not how life works.
- "At least it's not MS, cancer,AIDS etc" or "it could be worse"
This one really irks me especially since I have conditions that when quality of life is studied actually are worse than most of the "at least it's not" diseases. Having an MS diagnosis would change my life as I would actually get real treatments and people would take me seriously. Also ME is a"sister' illness to MS and some MS treatments could potentially really help me but I don't have access to those treatments.
This is not to discount the suffering of MS patients at all. It's just to put things into perspective. Do a search of quality of life for ME/CFS and POTS and look at the data. Even our most "mild" ME patients have a 50% reduction in functional capacity. By any other disease standard this would be considered severe. It just gets worse from there. Only about 25% of ME patients are "mild"
Here are a couple of quotes from professionals regarding quality of life for ME/CFS patients
"[An ME/CFS patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.
– Prof Mark Loveless, AIDS and ME/CFS Clinic, Oregon Health Sciences University, Congressional Briefing, 1995
"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami
Yes that one quote is from the 90's and still there are zero treatments for this disease. Patients are still told to exercise as a cure.
POTS patients have the same quality of life as a person with congestive heart failure. There are no FDA approved treatments for POTS.
- "You're too young to be sick" or "That's what happens when you get older"
If you are saying these things go f-yourself. If young people never got sick there would be no pediatricians or children's hospitals. I got sick as a kid and this was the excuse not to treat me. Then I turned 30 and my symptoms were just me "getting older"
- "It's probably just stress /anxiety"
Seriously? STFU
- "I'd love to spend all day in bed"
No you fucking wouldn't. Remember how people freaked the fuck out during "lockdown". In fact a lot of those people are still freaking out about it even though it wasn't a true lock down. Try living that life for decades.
Most people when they get a flu/virus go stir crazy after a few hours or a day of rest. Imagine having to rest like that your entire life. It's not fun or easy.
Many folks (myself included) with ME can't even "watch tv all day" I spend most of my life in a quiet dark room. It is not glamorous. I would love to be able to go out and do things but my body does not allow me. Being homebound/bedbund is not a choice it's a prison sentence. The crime: existing.
- " You can't be that sick , you did X last week"
Disabilities can be dynamic. Meaning you may be able to do a thing once but crash for weeks after.
When I was "moderate" and I wanted to do something like dinner with friends (no alcohol just dinner maybe a movie) I would have to be in complete bedrest for 1-2 weeks before the event to decrease the PEM. I would then be bedridden in agonizing pain, temperature regulation issues,severe cognitive impairment and orthostatic intolerance so severe I can't sit up (or I faint) for a minimum of 2 -3 weeks after.
Every dinner a friends house costs me more than a month of my life. And that pain I feel is also untreated so I just exist in absolute agony.
I am now too sick to even do that.
This post is longer than I intended but I think you get the point. If you are saying these things or similar things to disabled/chronically ill people please stop. You are not helping, you are causing harm.
Imagine just for a moment that is is YOUR life, how would you feel if these statements were a majority of your interactions with other people especially from friends and supposed loved ones?
Be kind.