Why Language Matters

When a celebrity is on the news for being diagnosed with something serious or they are speaking about it, there is often a sort of “backlash” that several of us experience a little bit every time language is used that doesn’t match how we identify with our illness(es).

Recently when Hollywood took note of Selma Blair’s multiple sclerosis (MS), there was an outpouring of support for her. But sometimes, when it was reported on websites and TV stations, the verbiage started to get to me. It wasn’t just this instance that bothered me.

I studied Health Education/Administration and worked a majority of my adult years working in developmental disabilities, memory care facilities and working in the patient-first field. Mind you, some of these studies were around 2008, for reference. I say this because person-first language and “politically correct” terms have changed very much. At some point, the person-first language you were always taught, the politically correct ways and 3rd person (I/me talk) turn into a language of its own! :)

Wording that we suffer from a condition

Usually when we see diseases reported on in media has a negative language fence around it. The main phrase I’m referring to is “suffers from”. Now, it is, to me, definitely not a choice of IF you suffer.

Do I often struggle with complications with Crohn’s disease? I absolutely do. When I’m explaining my diagnosis and symptoms to someone, I don’t open with “I suffer with/from Crohn’s disease”, although it DOES feel like that some of the time. I want to be completely honest with the person I’m talking to, educating or that has asked. I just prefer to hear/read “lives with”.

I won’t give a big emotional, motivational speech. We have zero control or when flares come and go, and the seriousness of IBD is often misconstrued on TV, film and especially in big Pharma commercials. We struggle sometimes. We suffer others. We pick ourselves up repeatedly, only to face more serious flares and potential surgeries, life-altering medications and side effects. Do I suffer? I absolutely do. And I can’t imagine anyone with the disease saying that suffering isn’t a part of this disease. But I also don’t need anyone to tell me that “the amount of suffering you feel is up to you”. It’s trash and I lose respect for people that try to kick me when I’m down with comments like that.

Choosing language carefully

The more careful we are about our language, the more the media will hopefully take into consideration how we would like to be “classified” as. I don’t want the label that I "suffer from" a condition because it affects the way that people treat me, the way they understand the disease, and how I handle my condition. By NO means am I not taking into consideration how others feel - please don’t misconstrue what I mean. So often in the media, we see images and hear stories about how people “suffer” from a disease. I feel that it labels us and puts us into a corner. We need to be more careful with the language we use in writing and verbally to ensure that people get an accurate portrayal of what life with Crohn's or colitis is like.

I prefer to read “lives with” when seeing anything on social media and in print, for the most part. Maybe you prefer something completely different. I’m not saying my way is the right way and I’m not trying to invalidate anyone’s feelings or writing styles. I’m simply here to be a voice to the many people on this site who also don’t like to see verbiage like “suffer” when the public already has conflicting stigmas about inflammatory bowel disease. There is no sugar-coating living with perianal disease.

I realize there are going to be a lot of people that disagree with what I’m saying, but as someone who has lived with several diseases since youth, I want to be able to take control of how language is used when mentioning someone lives with a disease.

What are your thoughts? How do you refer to your disease when you are giving your elevator speech?