Can you describe how your condition has impacted your family and/or social life? What do you do to successfully juggle competing demands?
My husband has always been supportive. We met on the internet about 15 years ago. When he was planning to travel to Colombia [to see me], that was when I got diagnosed. I told him “You know, you don’t need to deal with this, right? Honestly, this is a lot to deal with.” It was too much. He said he really, really liked me, actually loved me, and said he was not going to give up on me. He helped me a lot. Like, just to bring me here [to Canada]. They are a Pakistani family, so my mother-in-law came to see me and she said “No, we are going to take care of you and we want to make sure that you are going to be well.” Thirteen years later and we all live together, which I think is a blessing because I don’t have the energy to do a lot of things and they help me to cope.
Sometimes a difficulty I have is [with intimacy]. It’s like you are either too tired or too dry, and it hurts. I don’t know if people are comfortable talking about it, but it’s really such an important part of your relationship. So having that communication between me and my husband is key. He tries to be very gentle. It is still to this day a struggle to fine tune that. And one of the major life adjustments, definitely, was having my child [while dealing with] arthritis. I wish I could have more kids but I feel my complications were so bad that if I have another baby, I’m going to die and leave two kids. So, I had to make that decision to not have more children.
Arthritis is not perceived as a young person’s disease, so I did have to spend some time educating my family and friends on the matter. I believe it’s so important to surround yourself with supportive and understanding individuals. However, it’s important to realize that it could be very difficult for someone to understand if they have never experienced it themselves, which at times requires patience. I started experiencing arthritic symptoms after starting university and living on my own (outside of my hometown), so the every-day struggles were rarely witnessed by my family. It was also very scary at times for me and for them, as I was experiencing very unusual symptoms and had no one in the area to tag along with me when I needed to go to the emergency room in the middle of the night.
I also really had to plan when and if I could spend some time with friends since a week filled with schoolwork, on-campus classes and medical appointments often took the best of me and I had nothing left to give. I often felt unable to participate in evening gatherings or certain outings because I was usually out of commission later in the day. Where I could participate, I was often in unbearable pain, which probably did not make me a very pleasant person to be with. Though, through this, you find out who your true friends are and who is really going to be there for you at your worst.
My fiancé is also incredibly supportive and is always willing to help me in any way he can, which I am very grateful for. Arthritis has become a crucial part of both of our lives and in some ways, it really has an impact on the future of our family. For example, the disease and treatments can greatly influence our journey to parenthood. We have a long road ahead of us, but one that I’m sure will definitely be worthwhile.