I’m Aware That I’m Rare: Jas James (426)
the phaware® interview
Long-term Canadian pulmonary hypertension and lupus survivor, Jas James discusses survivor’s guilt and the importance of both emotional and physical support from friends, family and fellow patients.
I’m Jas James and I’m from Vancouver Island, BC, Canada. I was diagnosed 21 and a half years ago. I’m a patient and I also have lupus. I’ve had a lot of milestones lately. Every one is a blessing. I never thought I would see my girls grow up. They’re both married now. I never thought I’d ever see a granddaughter. I have a granddaughter now. I would say I’m at peace with my diagnosis. Every day is a gift. I’ve talked to my family about it and whatever happens, happens. I’ve survived over 21 years and I’m still going. It’s really a blessing. I’m lucky. I still have a lot of survivor guilt. It’s really hard on me when I see patients struggling, because I’m still doing well. I’m still doing well with one therapy. That’s really hard.
Losing friends is hard. I was here 10 years ago at the PHA Canada Ottawa Conference. Now I’m back. Some of those people aren’t here. Sometimes I just shut down when that happens. I feel coming to this conference I can give people hope. Actually, at the end of the month, I went to a Zoom meeting and there was a brand new diagnosed patient. When I told her my story, she said, “You know what? I feel good leaving this meeting. You just gave me hope.” I just tell them to keep going, live each day, do the best you can. Even if you can just walk a little bit every day, do it, but do it every day. Try and look after yourself as best as you can.
I don’t really think about having PH. I do have it, but I think about living every day. I think about the things that make me happy. I have a really supportive husband who wants me to have the best life I can, so he encourages me to do the fun things. He can do the things that help me not struggle, like housework and stuff. I have a really supportive family as well, daughters who will step up to do things. My granddaughter gives me so much joy. I just want to keep going and going.
Support is important because it’s emotional support, it’s physical support. The education, PHA Canada is giving us support. Vancouver Island support group. We all sit and talk about everything, everything in life. Family support is incredible. Everybody gets it. We’ve talked about life. They all understand. I even asked my husband the other day, “Do you think I’m lazy?” He said, “Not at all.” I asked him that because I’ve heard people say, “My partner just thought I was lazy, but I really had PH,” but he’s never thought that of me. That’s the only reason I asked him. I didn’t think he ever thought that, but I was hearing this from other people. Even my friends, my girlfriends, everybody is so supportive. If we’re going to go swimming, they’re going to paddle me out on their tubes so I don’t have to paddle. I’ve just had a lot of people around me always supporting me.
I always say one day at a time. So true. I’ve been through a lot of stuff, not PH, and somehow I got through that. Actually, between me and my husband, we’ve lost three siblings, not to PH, to other things, who are younger than me. I’m the one who is supposed to be the sick one. I’m the one that’s still here. I just think every day I wake up, it’s a gift. We’re somewhat isolated on the island. My clinic is in Vancouver. I have to say I have the most wonderful clinic, wonderful nurses, the same doctor for 20 years. Now, I have a new one, but the other one is still down the hall doing something else. They are unreal. They will answer you instantly on an email or a phone call. So I’m really lucky that way. Even though I don’t live in Vancouver, I hear friends of mine saying, “Jas, you really got great care.” I say, “I really do.”
Because we are a little bit more rural, our support group is really strong in coming every month. We get really excited to be together. I find it’s really important to tell your story and connect with people. I would say find support, join a support group, go on the website, PHA Canada. You’ll find support groups on there. You’ll be able to Zoom, meet in-person. You can phone somebody. You can email somebody. There’s so many ways to connect with people now with social media. I didn’t have that when I was diagnosed.
There’s one other thing I want to say. This disease is invisible. I don’t look sick. Even though I don’t look sick, this disease is not invisible to my friends. They all know what I have. They are very helpful in knowing my disease. That helps me. You have to educate the people around you so they know what I’m dealing with. They know what to say to me. They’re more than happy to say, “Here, can I take your bag for you? What can I do to help?” At the same time, I’m the type of person who likes to be as independent as I can, but I will speak up if I’m struggling and say, “Hey, can you just help me with that?” It doesn’t hurt to ask for help. I’ve met incredible people all over the world. I just want to thank everybody for the incredible care I’ve had from them and understanding.
My name is Jas James, and I’m aware that I’m rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @phacanada
