Table 2 Quotes from parents that illustrate the emotions experienced at different stages of the disease

And now all of a sudden he started complaining about his hip, and you know, he could have been… He’s a boy, so I was hoping that it was just that. But he had some inflammation, and he complained, so I was concerned. (EF)

In my case, she [daughter] had a streptococcal throat infection, which was treated with antibiotics, and then it started to swell, and then she started… She started limping. I went to the doctor two more times, and I said, “Listen, something’s not right. When she wakes up, when I go to get her from her crib, it’s still swollen, and her knee is bent, and she can’t straighten her leg for a good two hours.” … I wasn’t getting any response from my family doctor… [so] I went to [hospital name] and insisted on an appointment with a rheumatologist, and that she [daughter] be seen within three days. (EM)

It’s rather interesting, right from the get go: “You’re going to have to bring the child into emergency.” Okay…I flew in from [another city] and met my wife. Off to the hospital we went… And this was after my wife was interrogated the evening before, wondering if she was beating the child or what the case may be, because her ankle was just swollen out like a… like a baseball. And for a two-year-old child that’s quite traumatic, quite frankly. (EF)

No, no signs, no instances. It’s funny, I’m getting emotional, the first time talking about it. (broken voice, brief pause) So we didn’t have… We didn’t actually get any documentation or introduction to the fact that it might be juvenile arthritis. We thought it was an injury. So we had done peripheral research, (broken voice) but didn’t really know… Sorry, I need to back away for a second. (silence) (EF)

Just (brief pause) shocked I guess when I heard that she had arthritis, simply because I’d never heard of a child with arthritis before… And then coming here and realizing that it’s more common than people are [aware of] or than it’s known to be to people, I guess. (NF)

“Oh my God, what’s going to happen to our life now? This is crazy.” Everything just sort of falls apart and you focus on that child, because they’re really sick and it’s scary. (EM)

[My wife] met a woman who was 40 years old who had the disease since she was six. … that person’s disease had progressed actually quite a bit more than what we would ever hope that it progresses in our children, because of the lack of effective treatments. [Alluded wife exclaims: “Yeah. Huge.”], and the woman had a lot of crippling side effects at age 40. [Alluded wife confirms: “Oh yeah, unbelievable.”] However… Please finish the story. (NF)

[Alluded wife continues:] Well, [this woman] she’s under, yeah, a lot of deformities, she’s going through a lot of surgeries – shoulder, wrist, finger, knees, ankles. It’s just, it’s an ongoing life… [of] treatment for her. Treatment for her life is going to be ongoing. …So I was so upset, I got my sister to phone the nurse here, to [hospital name], to find out the extent of what this looks like and where this could go, if this is a possibility for our children. And she said within her 20 years of working here and being the nurse on staff in this department, she has not seen… like maybe one case, maybe two, that severe, that severe [cases]. It’s very, very rare right now. (NM)

We thought it was an ankle injury, and we did months and months with orthotics and everything else. And we have arthritis that runs in our extended family, and we never even thought of that [nervous laughs]. Oh, I’m getting emotional, but anyway, that’s exactly… So we weren’t prepared thinking it was arthritis. (EM)

But now that I look back, I should have put two and two together because my husband does have arthritis. Not since he was a child, but my husband has had two hip replacements and he is in his 30s. (EM)

No, I was just going to say, when my son started showing signs, I was praying, you know, “No, please no.” I knew. (EF)

So we’re still not… We don’t have a genetic marker, so we still don’t have a proper diagnosis exactly, but he’s been told at least that it’s just pain management at the moment, he’s not damaging his joints. (NM)

I’m still in denial about it though quite a bit… I mean I’m here and I want to be here for the knowledge for my daughter and for ourselves to apply to my daughter, but I am in very deep denial about her having arthritis. (NF)

Even my wife asked, “Well, like what if we come here this day and then like a week later, she has symptoms but we’re not coming back to you for two months and the damage [due to unnoticed inflammation of the eyes] is already done?” So basically [this] is what you do, get in a dark room or whatever and get a flashlight and just as long as their pupils dilate like they should… (laughs) [Another father adds: “It’s the proper medical way to do it.”] Yeah. And that I can take care of it in the basement with a flashlight. (everyone laughs) But that’s just if you’re really worried about it in the three months or whatever. I’ll trust the doctor for that. I’m just kidding. (laughs) It feeds into my denial though. “Yeah, you’re okay.” (everyone laughs) “Forget about it. I’m not worried about it.” (NF)

Yeah. It’s a scary diagnosis to have, but there is hope with the treatment. (NF)

[Daughter] got diagnosed when she was two. She’s almost seven… and, I don’t know, she… It works for her. The methotrexate is the best thing that came along for her, out of everything we have tried, and she’s been on it for three years … (EM)

Well, it’s so overwhelming. It’s so overwhelming… You know, their immune suppressants are serious drugs, you know? What’s going to happen to my child if I put her on methotrexate for seven years? (change in voice intonation) What’s going to happen? You know, what’s the future going to look like for her? So it can have devastating consequences, the medications. And plus, the eye drops sometimes… We were on eye drops for seven years, every single day, sometimes every hour. (change in voice intonation) That’s a lot to take on. (EM)

I always worry about her being around sick people. She’s immune suppressed. I’m like, “Okay, has anyone in your house had a cold? Do you have ear infections?” Anything. I don’t want my daughter around sick people. When she goes to ballet and I see a kid, they’re coughing, I’m like, “Really? You’re sending your kid here sick? Thanks.” So I get really upset and emotionally charged when I see sick people. “You should be home. You’re going to make my kid sick. I could end up in emerg[encies], in the hospital for a month. It’s happened. (EM)

It’s just tough for these kids. You know, it’s like he says like, “Why me?” you know? (crying) So it’s just… (gasp) Ah! It is what it is, but you know in some ways (gasp) – it’s interesting – it’s made him a stronger person. He’s really taking responsibility for his own health. And you know it’s early for a kid to do that. Like he’s growing up fast. And he’s… He’s meditating now. He’s probably the most popular kid in the school because he genuinely connects with people in a meaningful way. So he’s… (brief pause) It’s probably tougher on me right now than it is on him. (gasp) (NF)

She goes to bed on her own, you know, I don’t have to ask her; she just goes to the couch. …. Yesterday, we went boating. We were inner tubing, and she said, “Okay, I’ve had enough,” then she went to sleep in the boat. Or, in the middle of the afternoon, “Mommy, I’m going to go lie down.” But for a three or four-year-old to say, “Mommy, I’m going to go lie down,” to me, that’s a sign. You know, I… It’s just not normal for a child, three or four years old, or two, to put herself down for a nap. That’s a [sign], to me, that’s a sign that, hmmm… She doesn’t say that anything’s wrong, but it’s not normal for a child. (sigh) (EM)

Because one time at the nursery, my daughter was having a flare-up, and they called me urgently, “Come pick up your daughter, she’s being a princess, she’s throwing a… temper tantrum.” Seriously, my daughter is throwing a temper tantrum? That’s not like her. “Okay, fine.” She got home, she went to bed. That’s not normal. I went to [hospital’s name], and tests confirmed that she was having a flare-up. “Keep her at home; we’ll provide treatment.” And when I spoke with the director again, she told me, “No, I mean, that may have been part of it, but she was also having a bit of a princess tantrum.” Okay, fine, “If that’s your mentality, I’m certainly not going to argue about it with you.” I’m not going to argue; it’s not worth it. When people close the door, it’s just not worth it anymore. It doesn’t really matter what you have to say; their minds are made up and that’s that. (EF)

Human beings are like that. We see someone who has no hair because of chemo treatments, and we’re sympathetic. But you know, I have an aunt with fibromyalgia, and that’s what she said too, at work. She stopped working, but chronic diseases, where there’s nothing [visible]. It’s like having an extreme backache, … and you tell your partner, “I can’t do it anymore, my back!” But it’s invisible. It’s the same thing with our children, without [outwardly visible illness signs] (EM)

It’s huge. It affects my career. I have to take so much time off. Or they’re like, “Really? At [hospital name]?” … We were living here for six weeks one time. I’m like, I can’t go to work. There’s nothing I can do. Nobody really understands [at work]. You know, your boss, your peers, they’re sort of like, “Okay.” But really going through it, it’s terrible. (EM)

Because I also had something to do [to convince child of taking medication]. We started with methotrexate in pill form, until her body realized it, and then just drinking her medication made her vomit. So we had to change to injections. But she’s had blood taken so often that she’s developed a phobia of needles. (EF)

You don’t know what’s going to happen. It’s sort of living through the course of the disease that you sort of find your path and get comfortable within the system and all the health care providers that you deal with. I think over time, I’ve become more comfortable. (speed emphasis) Not really, because… (laughs) You can digest it, you research it, you read about it. You have all the information, but it’s still a rollercoaster ride for like eight years now. (EM)