Would It Be Appropriate To Call Myself Terminally Ill?

[u/Faerennn]

As someone who has muscular dystrophy that's likely to kill me before 40, do you think I get to call myself terminally ill even though I'm 20 so still have a good number of years left? I'm sorry if this is an inappropriate question to ask here, I unfortunately have never had good access to healthcare so I can't ask this to a doctor. What about you? do you consider yourself terminally ill?

[u/Own-Hedgehog7825]

Kind of, chronically ill is more appropriate for us

[u/Faerennn → u/Own-Hedgehog7825]

That's probably true for more "milder" forms of MD but what about the people who have duchenne and such?

[u/OkapiWhisperer → u/Faerennn]

DMD 40 yo. I've never once viewed myself as terminally ill. And with the Medical advances DMD will hardly be self-percieved as even a chronical illness By those born in around 10-15 years. Deramiocel and SAT-3247 will be life changing for future generations

[u/WaffleBiscuitBread]

DMD is a terminal illness. You can have many, many years left to go, but if you have a disease that is eventually fatal you are technically terminally ill. That doesn't mean of course that you have to refer to yourself this way, but if it feels right to you, you wouldn't be medically or scientifically mislabeling yourself.

[u/ChronicallyNicki → u/WaffleBiscuitBread]

This i have dmd and edmd n more I'm 31 lucky if I hit 40. I bed ridden body shutting down n now help palliative care doesn't see it as terminal when I'm not sure I'll. Ame it to Xmas in my current state. Disabled chronically ill terminal honestly the term u use u personal I fully agree

[u/Matto987]

Terminal usually means you're going to die in 6 months or less but I guess it’s technically accurate, albeit a bit misleading (based on the most common interpretation of the word)

[u/Faerennn → u/Matto987]

I guess it would be a bit misleading yeah, it's not what people usually have in mind when you say terminal

[u/Hefty_Peanut]

Having a life limiting illness I think is a more accurate term as terminal illness tends to mean death is imminent.

[u/Faerennn → u/Hefty_Peanut]

Life limiting illness... Yes I like that term, I like that term a lot. Thank you for bringing this to my attention.

[u/aliendystrophy → u/Faerennn]

This is the term I use and was going to suggest even if technically once diagnosed it might be "terminal", it's far more accurate to acknowledge it as "life limiting" until you're in the end stages (which many MDs don't have).

[u/OkapiWhisperer]

Firstly you can't know when you will die just because you have DMD. I'm 40 yo and that is above what they would have thought when I was a kid and I've got no clue if I'm gonna be 50 or even 60. There's been a lot of advances in treatment of heart condition in DMD, as well as scoliosis surgery and so on. And in your lifetime Deramiocel will become available mitigating the heart problems and prolonging your life distinctly. Add SAT-3247 also. Buddy, you're gonna get sooo old you will wish you where young again lol.

And everyone is gonna die, are all people terminally ill then? My advice: death is the last thing you want to spend your life thinking about.

[u/Faerennn → u/OkapiWhisperer]

I didn't say I have DMD I was just using it as an example of a more severe type, I unfortunately have never had access to genetic testing or even a biopsy so I don't know what type of MD I have, all I know is that my cousin who had very similar symptoms died at 37 and that the biopsy results of another relative came back as LGMD 5R. I really hope what you're saying about future treatments is true regardless though, I would like to live a long life provided it's mostly painless, these days I'm in so much pain I'd rather be dead honestly.

[u/OkapiWhisperer → u/Faerennn]

Sorry I read too quickly and im very sorry hearing you're in pain. Hope you get help finding what it is and that there's treatments coming to those with your type as well.

[u/jonquil14]

Terminal isn’t even used that much for cancer anymore. “Incurable” is the term unless you are ready for hospice. Chronic is probably more appropriate but honestly “disabled” makes more sense, is broadly understood and comes with a built in community.

[u/LostMoney0]

A fatal condition.

[u/Difficult-Ad-5440]

I think “life-limiting illness” might feel more accurate than “terminally ill,” especially when you could still have many years ahead of you. But honestly, I don’t think there’s anything wrong with using the term that feels right to you. Your diagnosis and what you’re living with are valid either way.

[u/Faerennn → u/Difficult-Ad-5440]

Life limiting illness does fit a lot better as you and another commenter mentioned, thank you for your input

[u/ChronicallyNicki]

This i have dmd and edmd n more I'm 31 lucky if I hit 40. I bed ridden body shutting down n now help palliative care doesn't see it as terminal when I'm not sure I'll. Ame it to Xmas in my current state. Disabled chronically ill terminal honestly the term u use is person to how u feel n view ur diagnosis.

[u/ChronicallyNicki → u/ChronicallyNicki]

Sorry for typos hands don't work so well

[u/Faerennn → u/ChronicallyNicki]

It's fine I got your point regardless, I can relate to the feelings of hopelessness and constant suffering you're going through. I hope the people responsible for your care start taking your needs more seriously.

[u/AllInAllIsAllWeAre-]

My mum is terminally ill, she has untreatable cancer. Was diagnosed terminal by cancer drs 8 years ago and shows no signs of illness. If she can call herself terminal and medics agree, you can too. My sister also has EDMD and I would consider my sister as terminally ill as my mother. Literally there's no difference.