Probably somebody to talk to in the healthcare field, who have no boundaries, no connections to a pharmaceutical company. Maybe, they could openly discuss medications and what medications would be good for your condition, and what you’re doing now with your condition, and how you can be more insightful into doing more things for your condition. And so, that would help.

There are not a lot of in-person support groups. I have only found one for me. But it’s 50 miles away from me, and so I’m not able to attend. But I wish there were more in-person support groups, like with a doctor or a clinician, someone that you can actually talk to. And have people that go through or you go through every day and just sharing. I think that will be awesome because I have looked for them, but unfortunately there’s not a lot of them. So, yeah.

I would like to find an app that works for me. I have looked at different apps that sort of track symptoms, and medications, and stuff, and I really haven’t found anything that I liked. But it would be nice to have an app that would be more of a journal that, “Here’s today, and this is my pain level, and did I take any medication today? Did I need this? Which joints are bothering me today?” and et cetera. That would be most helpful for me because then I could look back and see what’s going on. Was it related to… What was the weather like? What the temperature? That sort of thing. I know there are some of those available. I haven’t found one that exactly fits all those needs. But I think for me an app would be the perfect resource that I would use.

I don’t know if there is a resource that I haven’t been able to find, because pretty much everything is on the internet if you look hard enough, and the ideal support would be if there was a doctor, or a support person, or a website that would reach out to my family and explain to them maybe in better ways than I can about my condition and what they can do to help me.

I really never gave it much thought but now that you said something, maybe an arthritis website, other people on it, like a forum. I’ll have to look for that but I never gave it much thought until you brought it to my attention.

I think having a social group with people with the similar condition would be helpful. I haven’t found an in-person group that I would like to participate in where we meet maybe once a month and talk about things that we go through and talk about encouragement and all that and about living with rheumatoid arthritis.

I feel I have adequate resources to search for my conditions, and to discuss my conditions with other people that may understand. So, at this point, I’m not feeling like I don’t have any support.

I can’t really think of any tools or resources that I…I don’t know. There’s really nothing that I can think of. Basically Google can answer pretty much anything you need to know. And then there’s like a bazillion Facebook pages you can go to, to find stuff out. There’s really no ideal support resource for me. I like to just get input from several different ways.

This is a tough question, because I feel like as with arthritis, with as a lot of other diseases, there’s always so much information to dive through. And if you go to one website, it says, “This is bad for you.” But you go to another website, and it says, “This is bad for you.” I would love to have one place that I could log in, see the newest developments that are happening with RA in terms of drugs and other things, and listen to the varying viewpoints all in one area. Instead of going to a website that says, “This is amazing for you. This is going to cure your arthritis.” And then, you go to another website, and it says the exact opposite. I’d love to be able to find all of that information, so I can do my due diligence myself within one website. I think that, that would be huge. And then, I think too, another website with some resources, or people who are willing to talk like, “Hey, here’s their age, here’s their background. If you are struggling with arthritis, reach out to these people. They’ve said they’re willing to talk.” Because, I think, I would’ve liked to talk to someone who was younger, and not my grandma’s age when getting diagnosed to understand I can still have a normal life. I can still get married and have kids and do all this other stuff. Because, I think, when you’re that young, you think your life’s over. I would have loved a resource like that as well.

That’s a really good question. I wish that at beginning of my diagnosis, not even at the beginning of my diagnosis because I was diagnosed at 13, but I had been dealing with symptoms of RA since I was eight years old. It took five years to get a diagnosis of RA for me. I wish that at eight years old I had been diagnosed. If I had been diagnosed earlier, I probably would have had less long-term impacts of the disease. The disease process would have been less destructive if I had been in treatment earlier on, if people have believed me. I wish that there were resources for doctors, especially pediatricians, to understand different presentations of disease and it’s sad to say it this way, but to listen to their patients better, to listen to their patient’s input and not assume that because they’re the one with the MD they know everything. It’s really critical that patients are listened to and believed at all ages. I wish that resources had been there to help teach doctors and pediatricians that your patient’s input matters, not just yours. So that I think is important. I also wish that there had been information on the impact of a gluten free diet when I was first diagnosed rather than after I had tried and failed every medication for pediatrics, because that could have saved me years of pain and struggle and misery. I wish the resources had existed and been more known rather than just, “Oh, Hey, I heard this from another RA patient. He said this might help.” I really wish that those resources had been available and accessible to me then.

I would like to see more hotlines, but for like a nurse hotline or a doctor hotline that I could say, “Well, I read this online that bananas will help with it.” That’s just an example. And just to be able to ask when I come across something, because I’m not very good at … I can make a list, but I don’t keep up with it. I lose it and misplace it by the time I go back to the doctor. Maybe more local support groups or even an online video chat support group to where you don’t have to be in the room or something.

I would say one resource I wish I had was maybe a live support group that happened in my town, like in person, so I could meet actual people and discuss our challenges and support each other.

Well, treatment is expensive and insurance doesn’t cover a lot of the things. So, I think a resource that would really help people who have to deal with that, cut corners where it’s acceptable, or even not necessarily cut corners, but save money so that they can afford their treatments all the time, and not have to worry about it. One of my triggers is stress, and I stress about how I’m going to pay for my meds all the time, or my medical bills, or any of that. So, it would be nice to have some resources that would actually help patients, or people in general, save money here and there, so that it’s not as stressful when something unexpected happens.

Well, I wish there was more resources available about this disease specifically in treatments available and more specifically at the academic and professional level so that healthcare providers had a place to go. And that leads into my second part of that and the ideal support resource would be a knowledgeable healthcare provider six years ago. I’ve had to research and go through many different healthcare providers before I found one who was knowledgeable. Many said, “Hey, I’ve never heard of that before.” And that was okay for me, but I had to take my body elsewhere. So to me, the ideal resource would have been a knowledgeable healthcare provider.

I think I would like some resources on things like maybe best physical therapy treatment for rheumatoid arthritis. Maybe even alternative treatments, for example, like hot wax to dip your hands in, which I do use. Really clear resources for maybe what the best compression gloves might be. Just things maybe outside of the normal injections or NSAIDs or Tylenol that might offer some relief, even though it may be temporary, it may offer relief to arthritis suffers. I wish it would all be in one place; very simple, user-friendly website or book that gives you very clear, easy to get stuff that might help temporarily relieve your arthritis on a bad day.

I’m not really sure, but I would…So I may have it because I have a social worker who wasn’t able to come with me to my last appointment because of COVID and social distancing, but will be coming with me to my next dermatology appointments to help advocate for me, because I just feel unheard, which you would hope with pain scale and creaky joints and all they record that, that would help. And I mean, it has for me and for the nurses, some of whom also have rheumatoid arthritis, thought they were great. I don’t know, just being able to be heard, which I don’t think there is an app to find a doctor that will listen to you.