I’m not sure when we started noticing Joel’s vitiligo but at first, we thought getting it treated was a good idea. I think it was just easier too when he was younger and the white spots weren’t so spread out. When we first started to get him treated he was probably around 10 years old and he did not have as much as he has now. We did see progress but after a few months (or a year or a two, I can’t remember) we stopped going because the dermatologist stopped accepting medicaid. After a few months of no treatment it started coming back in places where his skin color had returned and it was getting bigger. We finally found another dermatologist that accepted medicaid and we started treatment there. Things were okay at first…
The more we went in for treatment, which was twice a week, the more we felt like we should stop. There wasn’t much improvement at all. As he got older, the white spots only increased. Another thing about him getting older was that he hit puberty. Something I should mention is that his white spots reached all over… including his ya know… manly hood. This caused the nurses that treated him to get a little comfortable and that was completely okay with us. We honestly didn’t expect them to treat him there. They were normally very professional and most would not treat that area but get close enoughish and do the rest of his body including his booty. Typically he had the same three nurses and they were very friendly with him. Even though things were okay, we felt like it was pointless and maybe we should stop.
The point of no return was when he began to be seen by a different nurse, we’ll call Popeye. Popeye was very nice and I’m sure had the best intentions but it didn’t work out. Popeye’s methods were different from the other nurses. You see, the chemical/ ointment/whatever the thing was that they rubbed on Joel’s body for his treatment was sort of oily and had a certain type texture that made it hard to come off with water. It was usually very easy to just wipe it off with a dry towel. But Popeye insisted on using wet towels which sort of just spread it out and and it made stay us they even longer while he cleaned Joel up. Also Popeye did every part of Joel’s body that had white spots. Which is a good thing, Popeye proved to be a great nurse that why. But for Joel, I could tell this was embarrassing. By this point Joel is in his mid teen years and this is very awkward for him. After this, we probably went like 2-3 more times and finally quit.
Reasons to quite:
- There was no improvements anymore
- Why not embrace Joel’s skin, it certainly doesn’t bother him
- The dermatologists visit were becoming extremely burdensome for him
So we quit and things are fine. Honestly, who cares that Joel has white spots? I’ll ya who…KIDS! But they are so cute with their questions and concerns about it. I’ll give two examples of kids reacting to Joel’s skin.
- My little cousins started asking questions about Joel and why he’s different. I often forget that Joel has vitiligo so when I get asked this by kids I always assume they are talking about his behavior and speech so I explain Down syndrome. After explained to them about Down syndrome I asked them to repeat what they learned to see if they understood. They did but ended with “and that’s why he is two different colors.” I thought it so funny and cute. Then I had to explain vitiligo…
- I wrote a post about Camp Able before but I didn’t talk about this. There was this kid we’ll call Bugs Bunny and for the sake of the story I have to say he’s white. Bugs Bunny was very sweet and invasive (and that’s okay!) He approached me during the talent show and asked if Joel was my brother. After saying yes, Bugs Bunny was like good because I have a question. I told to ask away and he said, “Is Joel okay? You know he’s got a rash that is turning him white. Soon he’ll look like me. You have to take care of him.” This was soooooo funny to me but I didn’t have the heart to correct him. I just said, “thanks, I will take care of him.”
So uhhhhh… the end. That’s my story of Joel and vitiligo. Learning to accept and embrace his skin.