We recently had the chance to interview a fellow Rheumatoid Arthritis Warrior, Eileen. She goes by the handle ‘Chronic Eileen‘ and runs her very own blog as well as having accounts on most large social media platforms. She is an Ambassador for the Arthritis Society and helps raise awareness for the disease. Here is our interview with her:
How did your Rheumatoid Arthritis Diagnosis Immediately affect your life?
Within the first month of diagnosis, we decided I would be saying goodbye to my 9 years as an esthetician. I also knew my boyfriend at that time wasn’t the kindest towards those with disabilities so I got rid of him. These events put me in a pit of depression and really messed with my head, it was a tough pill to swallow and I hit my rock bottom. Rheumatoid Arthritis turned my life upside down. I had to adjust to being a single mom, living on disability, and with a severe illness in what felt like a blink of an eye. It seems to affect every aspect of my life in some way or another and it is constantly changing so I have to keep getting used to a new symptom or side effect or my disease progressing. It’s up and down.
Did you find any support from friends or family? Did you lose friends?
Many friends either stood up and helped me when I needed it or seemed uncomfortable about the situation. I lost plenty of friends over the first 2 years of living with Rheumatoid Arthritis. I can’t go out, drink at a concert, at times I was angry and took my anger out on something they were doing to upset me, or our lives just changed over time. I do notice over time that less and less talk to me. Chances are they are just carrying on with their lives, ours are so different now. I learned who was a true friend and who was not. Chronic Illness comes with a lot of isolation.
Ever since the death of my Grandmother and split of my parents 10 years ago, my family hasn’t been much of a family, really cold, distant and only holidays were times everyone was forced to see each other.
I have always had a strained relationship with my Mother which went into full effect when I fell ill. Sometimes I wonder me becoming sick makes me crave that Mothers help and attention more but your spoons are too valuable for those who won’t be there for you. However, I had to find it in myself because I am the Mother now and I must take care of my son, despite my adversities. It took awhile for my son’s father and his family to get I would need a bit more help and what it was like but they have been great since they kinda got it. I am forever grateful for that support because my family doesn’t help out. My father lives in China, so he can not physically help all the time but we speak often. His sister/my aunt had the same disease, so he kinda gets it. I was diagnosed the same week of her death. Wasn’t an easy time for us.
What do you wish Dr’s told you about R.A. when you were first diagnosed?
Rheumatoid Arthritis is such a confusing and complex disease it’s hard to be told what you should expect first, even though that is what I wish I knew. Every case is different. I do wish they would push physical activity a bit more and be more open with medicinal marijuana.
What do you do for pain?
I am working away on a big recommendations post but my go to for a bad day is rest, sleep, ice packs or heating pads, medicinal marijuana, the sauna, and yoga/physio! Or a hot bath.
Tell us about the Arthritis Society and what they do
The Arthritis Society is the largest non-government funded charity in Canada for Arthritis research, treatments, education, advocacy, and support, for those that are American they are the Canadian version of the Arthritis Foundation. They put together events each year such as the Poker Gala and The Walk To Fight Arthritis to raise awareness and funds. I have been working with them as an Ambassador for almost a year. They’ve featured me on TV and online newspaper promoting the Walk showing that I am not what the typical person who lives with Arthritis looks like, it affects more than the elderly. My goal is to raise a bunch of money for them as well as advertising because that is never free. The communications manager for the BC & Yukon division and I have worked closely together on discussing the needs of Arthritis in Canada for the past year. For me as a single mother, all the suddenly alone and on disability speaking to them and going to The Mary Pack Arthritis program has been an amazing experience for me “healing” inside over my diagnosis. They’ve both helped me with my inner and physical strength to fight this disease. I couldn’t be more happy with their help and want everyone to have a similar experience as I did. So funding is crucial.
What’s the hardest thing you have to face as a chronically ill mother?
The answer is in the question. The hardest thing to face is the illness itself. The effect it has on someone’s life in every way, especially as a young adult and with a child.
Have you and How did you explain to your son what Rheumatoid Arthritis is?
I volunteered at a children’s arthritis event which I brought him to meet children with Arthritis, I thought this might make him a little more aware of what I go through and I want him to be compassionate towards others with disabilities. I have taken him to several different appointments and charity events over my diagnosis. He’s only 4, coming up to 5 in December so I am uncertain if he really understands just yet but he is aware Mommy is sick. One day we were speaking of where people go during the day, I was explaining work. I said “I don’t have a job” and his response touched my heart when he said, “That’s because you got sick!”. My heart warmed, I felt like he is starting to understand and even him just saying that made me feel less guilty about being on disability. Thank you, little guy.
How did he take it?
I don’t think he fully understands yet. He’s been such a good kid, definitely my rock! But he is still so young. I know it’s tough on him, especially the back and forth between homes when I struggled with my health last summer/fall. He was sad to be away and seemed confused which place to call home.
DO YOU SUFFER FROM DEPRESSION?
YES. I ASKED MY PSYCHIATRIST (ONE THAT SPECIALIZES IN PATIENTS WITH RA) ABOUT THE DEPRESSION SIDE OF THIS DISEASE. HE SAID 66% OF RA PATIENTS HAVE DEPRESSION. I HONESTLY WANT TO KNOW WHAT THE OTHER 44% ARE ON OR I CALL BULLSHIT, THEY GOTTA BE LYING! NO WAY YOU CANNOT BE DEPRESSED WITH THIS DISEASE.
What are some tricks you learned with living with Rheumatoid Arthritis?
Fatigue Management! And to keep really really organized, simplify my life and kick out those who cause me stress. And always keep fighting. I have been working away on trips and tricks blog post which will be done shortly!
What are some words of Inspiration you want to tell Other Parents that have R.A. and young children?
Don’t let the guilt of not getting everything done get to you. I know it’s hard, there is no way to be perfect in life and it’s certainly impossible with this disease. Communicate with your children, involve them in your health journey but don’t scare them about the reality. When I am sick and I need to rest and have my son he cuddles up to me while I sleep and he watches the tv or his tablet. At first, I really didn’t want him to be on the tablet so young but then I realized how much it was helping me rest, he wanted to show me everything he found. Rheumatoid Arthritis and the energy of a toddler boy do not match. The older he gets the easier it gets.