Supporters, my mom, my brother. My brother was a big supporter, but he passed away two years ago, so it’s been difficult for me. He was very young, 52. My husband, of course. My kids are great supporters. Like if I ask them, “Okay, you get a glass of water for me because I can’t get up. I’m having issues with the RA,” and stuff like that, so yeah, they’re very helpful. They’re 18 and 14, so they’re older kids. They’re not younger kids and stuff, so very helpful.

My biggest supports are my rheumatologists and my PCP. They are actually in contact with each other. My PCP knows exactly what’s going on. Sometimes if she has an idea of what to do, what medications to take, she contacts my rheumatologist. My other support is my family. As soon as I told them, they have been there for me. They sometimes even help me walking my dog when I don’t wake up feeling well. Sometimes when I get my crying spells because I’m just feeling awful physically and emotionally, they’re there for me. People at my church they’re always praying for me. My best friend is someone that I can just call and talk to. And those are my biggest supporters.

My biggest supporter on a day to day basis would be my daughter. She lives with me. She knows if I say it’s not a good day, she picks up extra slack. She’ll have to go to the grocery store, change the cat litter, do all those type of things. She helps me look at treatments and is this working? And what do you think about if we try something else? Or she reminds me if I’m having a flare up that I can take some prednisone and it will help me. And just there on a day to day basis for that sort of thing. As far as medically, physically helping, that will be my doctor. I could not be happier with the doctor that I have, she is so supportive. I decided I didn’t like the methotrexate, it was making me nauseous and I didn’t want to take it anymore. And she said, “Well, let’s see what happens.” And she was able to discuss with me maybe alternatives or what we could do. Ultimately, she left it up to me. And then it didn’t work out and she was there to guide me in our next steps and we went back on it. Without her, I have no doubt that I would still be living in a wheelchair with very, very limited mobility. So that was, as far as physical help, that was the most.

I really haven’t had a lot of supporters because they don’t understand what I’m going through. They don’t understand the pain. They don’t understand why I’m tired all the time. I do explain to my doctor, but he’s not a close supporter. And sometimes my friends will listen, but again, they don’t understand.

My biggest supporters are my spouse and my rheumatologist and then my siblings and parents. They accommodate me and the condition and are understanding when I’m unable to participate in any activities, or help out as much as I used to. They have been a great help, especially when I’m not feeling very well. My rheumatologist always knows what I need to do when I’m not feeling well or having a flare up and how to treat me and all the medication I might need or any questions I have.

My sister, she’s always there for me, giving me advice. I have multiple sclerosis too, so it’s a double whammy on me. But I say my sister, she’s there to talk to all the time and help me make my decisions. Then I will bring my decisions to my doctor and then we’ll discuss them. But I would say my sister.

I am very thankful to my supportive family, my parents, my sister, my significant other, and my children. They all know what I go through on a daily basis, and they know that occasionally I will have really bad days where I’m unable to get out of bed. So, they are helpful on those days and they cheer me on in hoping that I get better and have better days more often than not.

My doctor’s great. I trust him a hundred percent in all of this. My family’s been good as well. They know that I’m going to say that I’m fine, even when I’m not fine. So they just give me my space and they wait for me to ask for their help. They don’t try to push their way in. My boss and my co-workers have been good too. I haven’t had to miss work for any of this but they work with me when they know that I’m not feeling that great.

I think first and foremost, finding a great doctor who listens to you is absolutely key. I did not particularly love my first rheumatologist that I met with. I didn’t feel like they understood me. They had a lot of very old patients and I was very young. And so I kept going to different doctors until I found a doctor that I felt understood me and believed in me. And now, I have very candid conversations with them on how I’m feeling. When I message them, they totally understand what I’m going through and they want to do something to help me to feel better. My husband and I have been thinking about having a baby and so my rheumatologist has been great in talking about what medicines I can and can’t be on for that and answering any and all questions that I have in regarding to like that next process in my life. And then I would say definitely my husband, he’s been absolutely amazing. I’ve learned to ask for help. And so anytime I say, “Can you help me open this? Can you do this for me?” He does. And then when he knows I’m not feeling well, he’ll undo my toothpaste cap for me, which is a very little gesture, but for someone that has arthritis is really important because then I don’t have to ask for help and it’s just done. And it makes you feel really understood and cared for. I’d say those were really important to have. The other thing I would say is that I did start an Instagram specifically for arthritis so that way I could talk about it with other people who are like minded and that’s been a source of comfort to talk to other people who are experiencing the same things that are the same age and kind of get their advice and their input on things. That’s been great as well.

My biggest supporters were my family, especially my mom, when it comes to my RA. I also have type one diabetes, and she was my major supporter through that as well. If my mom didn’t help me through my diagnosis I don’t know what I would have done. I know friends of mine who had type one who didn’t have the family support that I had, who really struggled to take accountability for their condition, and to care for themselves. My mom put the responsibility on me. It taught me to be my own advocate, and that was such a valuable lesson. She believed me through everything, even when it was really hard and really miserable with flare ups of my RA, she told me to fight for myself and don’t let people tell me how I feel, and I’m very grateful for that. I know when I was in school, she would work with the school individuals, whoever was in charge of five before plans, and attendance and everything else, to make sure that I had the accommodations that I needed in school, which was absolutely critical. And she was my biggest supporter growing up.

My daughter and my best friends have been my two biggest supporters that you have seen. That I will do things even when I don’t feel like it, but they understand when I say “No, I just can’t do it.” They will adjust plans and they will … They work with me. They offer to help more. My dad, my mom, brother, and sister, my family that’s around, and friends. I have a very good support system. So if there’s things that I just am not able to do that day, they are very understanding of it.

My biggest support when it comes to my condition is definitely my family and friends. They have been very accepting and accommodating. And they try to be understanding, although it’s hard to understand something unless you actually have it. But they have been very, very supportive.

In my reality, I don’t think most people truly understand what I deal with on a daily basis. So I would have to say, my supporter is my rheumatologist who truly understands what having my condition does to me and what I’m dealing with on a daily basis. I do have one friend who gets certain things and she does help me a lot as well. Like for example, in COVID, she went shopping for me when I couldn’t get the stuff that I needed online because she knew that I would be compromised if I went into a store. But as far as support, there’s really not a lot out there. I mean even your family, they look at you like you’re lazy or you don’t want to do things or you don’t want to commit. I’ve been called stubborn because I know that I can’t do something. So I’ll say, “That’s not something I’m going to participate in.” And it’s a struggle and it’s a daily struggle.

Well, my biggest supporter by far, with no equals, is my darling wife. She walks with me despite the drastic change in our life and our lifestyle over the last six years. And she is just a trooper. One of the big things that she did is two years ago, she retired early from work at the age of 56, so she could become my full-time caretaker and so that we could spend more meaningful time together with the time that I had. I also have a great medical team, a healthcare provider team. But my rheumatologist, especially, I’ve seen for the last five years, she is just amazing. She is caring, loving, thorough, professional, knowledgeable. But I always know that she’s in my corner. And if I have issues with insurance and need someone to lobby on my behalf, she is always there. So, I can’t tell you the comfort that I have in having an anchor on my team.

My husband has been my biggest support system through my rheumatoid. My parents were when I was younger, but he has been with me for 21 years now. And about five years ago, my arthritis came out of remission. So he has cooked dinner, he has washed my hair, he has helped me get dressed. He doesn’t expect me to do a whole lot other than rest and try to feel good so that we can have some nice times together. So he has been my biggest support and the love of my life.

I would say my biggest sense of support comes from people I have met with similar conditions online and talking about it and exchanging ideas and just helping nudge me to nudge my doctor. My friends have been supportive in just understanding that this is going on. So yeah.