Illuminating the Burden of Chronic Disease for Rheumatoid Arthritis Patients

When you can help people live their best lives despite suffering from a chronic disease like rheumatoid arthritis, you can change the their lives for the better. And all you have to do is listen to their story, and healthcare ethnography allows for this kind of dialog.

“What you can do with this machine, like when you’re hemming Levi’s – if you’re doubling it – you see how thick that is. A lot of sewing machines won’t sew that, but this will. You can hem them; just go right on with it.”

Adult rheumatoid arthritis burden of disease insights study. Findings and emerging themes. Prepared for by Bristol-Meyers Squibb, March 31, 2018.

“I’m never pain-free. I will be quite frank with you and say I’m not pain-free. I have pain in my feet and pain in my hands every day.”

“One day I would be completely fine; I would have no pain anywhere. And then the next day, I couldn’t walk.”

“If I’m hurting, I make sure that I don’t limp. Maybe I would want to, but I won’t because I want to look good!”

“I hate to say this, but Embrel came out about the time that I was like, “I am so tired of fighting this. I just want this to be over.” The biggest ‘a-ha!’ moment was when it was raining, and I was running from one building to another at school. I couldn’t run; I kind of hobbled. It started with knees and feet, and I thought, ‘well, I’ve just pulled a muscle in my knee, and I’ll just have to walk for a little bit’. And then, three months later, I was pretty much a 90-year-old man walking, hunched over like this and just shuffling.”

“I was terrified to go to these doctors’ appointments because I didn’t know what was going to happen next. At this point, I’m still thinking eventually, this is going to kill me. The pain is so terrible, this is what I will die from.”

“I have to qualify that my thoughts about pain, I think, are a little different than other people’s thoughts about pain because my thoughts about pain don’t have a number on them.”

“Many people don’t even know I have RA because I work very hard at not letting it show. People that I’ve been going to church with for years have no clue that I have it if I hadn’t have bring it up. They say, “You have RA? Well you don’t look like you have all RA.” I say, “I know.” “Well, you don’t ever talk about it.” “Well, it’s because I don’t want to complain”, so most people don’t even know I have it.

“It’s on my mind every day. There’s not a day that goes by where I don’t think about having arthritis or that I don’t remember that I have arthritis because I’m dependent on these pills. And if I don’t take the pill, if I forget my medication, then it’s hell to pay that night. So, I have reminders on my phone that pop up every day: “Take your medication, take your medication.””

“Am I going to get to the point that there’s not anything else? And if so, what am I going to do then? It makes me skeptical, I mean scared, just worried, you know? Then, if I got crippling arthritis, you know, that whole term comes back. What will I do? I’m ambulatory now. I can climb one flight of stairs, not more than that, but I can get up and down the stairs that much. What will I do if it comes to it? I guess I’ll do what I have to do, but hopefully it won’t.”