Retha De Wet, an MG patient advocate, shares why she wishes she had spoken up sooner about treatment side effects, including vein damage and dental complications, and reflects on the importance of self-advocacy while living with chronic illness.
Transcript
I think for me, initially I had to get quite high doses of cortisone, which kind of ruined my veins, and I just kind of accepted the fact that I would need to get IV access on my foot and again, didn’t stand up for myself.
So for me, definitely getting a port earlier would have been something that very much could have saved me a lot of trauma and a lot of discomfort, which wasn’t very necessary.
And then other than that, I just kind of accepted every side effect as the price I had to pay for being chronically ill. And for example, I completely ruined my teeth by doing that. Like my gums, my teeth are completely destroyed from immunosuppressants.
So for me, I wish I spoke up about that sooner. Like, now I’m getting a lot of, like, dental issues that most 30-something-year-olds don’t have to deal with.
So I think really just not accepting every single side effect as just a given because some people don’t have these side effects. I just thought everyone struggled with their teeth, but it’s not as common as it’s supposed to be.
