I think I would tell them do as many things as you can do before you get hit with this disease, like go to Europe or tour Europe, go to Australia or the thing you really wanted to do. Probably can’t, because you can get blood clots on the plane over there and stuff like that from sedentary sitting for 24 hours. I would just take advantage of myself years back and do things until the ticking time bomb hit, and just look for medications. Don’t settle for one medication if it’s not working and stuff, just hop around even more than I have in the past.

The first thing I would tell me three years ago is to take time off, to process and to not ignore the fact that you’re sad and that you want to cry. If you want to cry to go ahead and cry. The other thing I will tell myself is not to keep it a secret. It’s okay to be sick. I mean, there’s nothing else you can do about it. You’re sick. You’re sick and you have to deal with it. What I would tell myself is that, this is a fight, basically that you have. That you have to fight every day, it’s not something that you can just can ignore you and will ignore the pain. And the pain will go away. It doesn’t work that way. The pain just stays there. The other thing that I will tell myself is like the sooner that you find support the better. And I will tell myself to talk about it. It’s something that you have to live with and you have to talk about it. And so I will tell myself that also that now, that unfortunately, the illness progresses and it’s not something that becomes better, it’s just there. And so I’ll tell myself just to buckle up.

The advice that I would give to myself at that time, it would be to learn everything that I could possibly learn about the disease and take action. And if it isn’t working, to let the doctor know, not to just assume that I need to feel a certain way. That there are things that you can do. If you’re having a bad flare up, there are things that can happen to make it better. Don’t just assume that you have to feel terrible and not do anything ever again, that you’re just going to be this house bound person. It can get better. If you keep trying, if something isn’t working, let your doctor know. You got lucky and picked a fantastic doctor so that’s key. Evaluate the doctor at all times. If they’re not open to helping you out, look for another doctor, but mostly just keep trying and communicate with your doctor about what’s going on. And yeah. And keep trucking.

I would tell them to do a lot of research, that they need to be their own advocate. Don’t just take one doctor’s advice, get a couple of doctors’ opinions and then do what’s right for you and your lifestyle. And what would I tell that person how I feel now? I feel awful most of the time because this wasn’t diagnosed soon enough. It took five years to get a correct diagnosis, and that was way too long.

I would give myself advice that this would be a difficult condition to live with, and to be patient and strong physically, mentally, and emotionally. I would tell myself there are many disappointments, but there are also many optimistic things to look forward to. I would tell myself I have to live gently, but also not to stop living. I would tell myself that this is not an easy thing to live with, but you can still have a life. And depression is a part of this condition, but there’s also help for that.

I would say, take better care of myself. Try not to do too much cold. Do not sit on cold pavement. Do a lot of reading, do a lot of research, take preventions, exercise more, eat healthier. If I would’ve known then how to take care of myself better, I would have. I would just say get all the knowledge you can on that computer and look up all your questions.

I would simply say to myself 11 years ago that you have to just give it time. You have to let the medications work. Don’t get discouraged because, in hindsight, not all medications work in the longterm. Just be receptive to being relatively pain free or minimized pain while the medication is working, know that there is multiple medications available. And that you may not get all of your answers with one rheumatologist, as I have gone to a secondary rheumatologist in Boston, and not everybody thinks the same. Just don’t be so hard on yourself.

First, I would tell them, do exactly what you’re doing. Don’t believe the people that say it’s all in your head, blah, blah, blah, because it’s not. The second thing is don’t worry. It does get better but then it gets worse. But then it does get better again. So it’ll all work out in the end.

I found out that I had arthritis when I was 24. So I took it really hard because I felt like I was so young and then arthritis is like an old person’s disease. So I wish I would tell them that it’s going to be okay and that there are other people that are young that also experience arthritis. It’s not just old people. And I think I would let her know that there are going to be hardships. There’s going to be times when you don’t feel well. There’s going to be times when you’re tired, when you get sick easier because of all the autoimmune suppressing drugs. But I would want to tell myself then that you’re going to have a great support system. You are going to eventually marry a guy who will take great care of you and always be there to support you and that you’ll get a really great community around you that understands what it’s like to be sick and will not treat you differently because you do have a condition.

I would tell them that it’s going to be really hard, and you’re going to have a lot of people who don’t believe you, who don’t believe your symptoms, who think that you’re faking it, who think you’re doing it for attention. But I would tell them just stick to your truth. Don’t let anyone doubt you or your symptoms. Don’t let anyone tell you that you’re making it up, you’re doing it for attention, because no it’s real, and the more that you fight for yourself and advocate for yourself, the better off you’re going to be. I still have joint pain and stiffness, but it’s much better now than it was when I was younger because I went through some really bad flare ups. I spent weeks in the hospital with my RA. I was in so much pain. I was in a wheelchair. I couldn’t walk. Now, I am a fully functioning adult. I walk. I do stuff. I exercise. I have a beautiful wife, and things get better. They do. Just keep fighting for yourself.

Back then, I was so frustrated because I went to several doctors that told me that it was in my head, there was nothing wrong with me. So, I guess if I went back and met that person, before I met my current doctor and she actually accurately diagnosed me, is that I would say, “Things will be okay. They’ll get better. I still have bad days, but at least we know what we’re dealing with.”

If I could go back and talk to myself when I first got diagnosed with this, I would advise myself to get more aggressive with treatment to try to prevent it from getting this bad, because I didn’t take it as serious enough when I first got diagnosed as I do now. And now I know the repercussions. Need to lose weight, because the more weight, the more pressure you put. But we can manage it and we can do well with it. Just know that there’s going to be times that you’re going to have to say no, because you’re going to be hurting and you’re not going to be able to do something with your family or your friends that you really want to. But we will survive and we will get through it.

If I could travel back in time and meet the person I was before I was diagnosed, I would tell them to please enjoy every pain-free second you have. Really, just do everything you can because in the future you won’t be able to do it. I would tell that person that I’m constantly in pain now, and I can’t do most of the things I was able to do before.

If I could travel back in time, say 10 years or so ago, I would tell myself to cherish every day, and love as much as I could, as thoroughly as I could to those around me. Because it becomes difficult later in life. I would also advise myself to take care of my physical condition as far as diets, as far as exercise. And then just have a passion for loving one another. How I would describe it, it would look horrible to my person 10 years ago. So I would probably only say that I’m a 100% disabled by the illness, and letting them know in 10 years that’s what the outcome was. But I would not tell them the extent of pain or suffering that I’ve had to go through, and by proxy, my wife, that this disease has caused, because that would cause an early onset of depression.

If I could go back in time and tell my 15-year-old self anything, I would tell her that, “Once I felt good and got my arthritis under control, I would want to have more of an exercise regimen later on in life.” It becomes more difficult to exercise, to start from ground zero and exercise and work your way up. So that’s what I would definitely tell my younger self. I would insist on it.

Well, it took well over a year to get diagnosed and if I could go back to before that, while I was trying to get diagnosed and insist that my then-GP who is no longer my GP, test for … Oh, I forget the rheumatoid arthritis test, but she did actually run a blood panel that has nothing to do with my thyroid. Then, yeah. I would give myself, tell myself the test that got me in with a rheumatologist in the first place and say, “Here do this,” because it took, yeah, like a year and a half before anyone even tried to test for that and I think that if we would have tackled this earlier, I would be much further along in my progress. How I feel now is in pain, not heard, and frustrated.