Rheumatoid Arthritis (RA) is a chronic, progressive, and often debilitating inflammatory disease that causes pain, stiffness, swelling, and loss of function in the joints. It can affect people of any age but often begins between the ages of 30 to 50. About 300,000 Canadians live with RA
In this Talk Over RA campaign I wanted to discuss living well with rheumatoid arthritis – outside of the medication box and more than what our doctors can offer us. Speaking with our health care professionals is so important but they are often months in between appointments and can’t offer an answer to everything about living with rheumatoid arthritis. Many times while listening to patients tell their story I discovered questions I needed to ask my health care providers without knowing first how to word it.
In the previous Talk Over RA campaign I interviewed Dr. Diane Lacaille, rheumatologist and Scientific Director for Arthritis Research Canada about how to speak with your rheumatologist but I am doing something different this round. I am talking about living with rheumatoid arthritis with other Canadians that have RA.
Patients speak a certain language to each other. Speaking with others who understand what you are going through is as equally important as speaking with your rheumatologist about remission.
When I was first diagnosed with rheumatoid arthritis I felt very alone and I struggled with my diagnosis. My aunt who lived 40 years with RA before me and passed away right when I was diagnosed with RA was someone I really wish I had to speak with at the beginning of my diagnosis because she was the only person I knew living with the disease at that time. I didn’t have someone to ask for advice at first, so that is why I have chosen to ask members of my community what advice they would give to someone just diagnosed or struggling with their rheumatoid arthritis and how someone can advocate for themselves.
Knowing how to voice your concerns with RA is the first step in speaking with your rheumatologist about a better treatment plan.
I asked my Canadian RA warrior friends two questions: What advice do they have for someone who is newly diagnosed or struggling with their rheumatoid arthritis, and why is it important to advocate for yourself?
Julia McNally a certified yoga instructor and chair yoga instructor for arthritis who’s been living with rheumatoid arthritis since she was 2.
I know that it might seem really scary or overwhelming to be diagnosed with a chronic illness like RA. Take a deep breath…. exhale…… You’re not alone. There is a lot of support, education, and medical advances at this time that can help people like us, to live better lives. Ask for help. Trust in yourself. Work with your doctors. Take it one breath at a time. And remember, you can live WELL with arthritis.
Lene Andersen is an award-winning blogger, author and advocate for rheumatoid arthritis and disability. She lives in Toronto with a cat and too many books.
There is so much I would want to tell someone who is newly diagnosed, but let me share two of my top tips. First, remember that you are the leader of a team — this is your body and your life and taking charge (even when it’s difficult) will get you further than handing over control to someone else. Second, RA is part of your life, but it is not your whole life. Follow your dreams, even if you have to go at it from a different direction.
It’s essential to be your own advocate. Your doctor is an expert, but so are you — it’s your life and your body and no one knows better how RA is affecting your physical and mental health and your ability to participate in all the things you want to do. You see your doctor maybe 1-2 hours a year, but you live in your body all the time. Empowering yourself to take charge and be the leader of your medical team will get you further.
Read Lene’s Talk Over RA blog post – Never Settle with RA: Why You Should Push for Remission and 4 Tools to Help You Get There
Louise Adrian is a grandmother who when not found working is in the kitchen using her cooking skills from classes in Italy. Louise was diagnosed with RA 8 years ago and is currently in remission for the last 4 years.
My advice for newly diagnosed people would be to research, don’t be afraid to ask questions and keep asking. Some medications will work for you, and some won’t, don’t stay on something that’s not working. I ended up changing rheumatologists after a few years because of lack of follow up with things we discussed for treatment. I would also keep a journal – list what you eat as some foods can give you inflammation, what you take for medications and write daily how you’re feeling. I also review my bloodwork and compare it to previous bloodwork to make sure my inflammation markers keep low as well as my liver enzymes.
Having arthritis has taught me to appreciate the small things. Being active, self care, understanding what my body needs and being there to help and support others that have chronic illness. I am fortunate to have a great support system with my family and friends.
I think of the first thoughts I had when I was diagnosed was how do I fix this. I had lots of questions and had to wait months to see a rheumatologist. Learning how the body works, working on gut health has become big for me. I remember asking about food, side effects to meds and asking about RA groups. My Rheumatologist had no answers for most of my questions and told me to not go into RA groups. What I have found is you know your body the best, you know how you feel after you eat, how a certain medication can make you improve or not feel good. I have become a researcher, look things up, try things – diet, what exercise is best for you. Find some RA friends to see what is working for them.
Go to your Dr’s appointments with a list, don’t feel rushed, this is important as Dr’s have busy schedules but it’s important to leave feeling like you have more knowledge to keep going, improving and that the protocol you are on will give you better quality of life. There also have been times that I took someone with me when I was really in a bad way. I knew I wouldn’t be thinking as clearly as I wanted to get across what was happening to my body. I wrote down what was going on, symptoms I was having and took my support person with me so that I left feeling heard and with a plan. This is a process, finding what’s going to work for you to give you a better quality of life. Wishing you all better health!
Julia Chayko – A writer, actress and international arthritis advocate from Vancouver B.C. who has published poetry, fiction, and creative non-fiction. She is a contributing writer to three anthologies, and the author of “The Old Lady in My Bones,” a blog about living her best life with arthritis.
Be patient. It takes time to learn how to live with chronic disease. Ask your medical team questions on how to improve your day to day living. Seek support in community groups and connect with other advocates and patients – learning and sharing with others can help you find coping techniques you might not have thought about. Don’t feel guilty saying no – it’s okay to be selfish when you need time for yourself. Distraction can be a powerful tool. Make time to find something you always wanted to try. Be kind to yourself. Don’t be discouraged by setbacks – let them happen and begin again on a new day. Celebrate your victories, no matter how small or insignificant they may seem to you – they are yours and are more powerful because of your limits.
Nikki Bhatti – 32, diagnosed with RA at 19, a wife, works fulltime in finance, enjoys traveling, being physically active and long walks with her dog Knight. Nikki is a member of the Arthritis Research Canada patient advisory board.
Be kind to yourself. Take time to recover from long days/ activities. It’s important you organize so you don’t feel overwhelmed. Prioritize yourself and where you want to spend time. Listen to your body. Don’t feel obligated to attend events. Don’t feel like you’re letting others down. Nourish and sleep well. Be patient with yourself. Take care of your body and accept your limitations.
There’s a lot of stigma around invisible illnesses. Those who don’t see it don’t know what you’re going through so it’s important to educate those who are unaware of the illness. Because no one will! There still needs to be more education and awareness around the disease.
Lisa Harris, 43, Physiotherapist, Married with 2 kids and living with RA for 6 years.
Take your moments as you need them, allow yourself to grieve, and learn how to grieve. There is strength in asking for help. You are not weak and you are not a burden. There is always hope. Know that you are not messing up your kids, you are not ruining their childhoods.
Learn as much as you can about the various adaptive aids and helpers out there – this is where patient mentors and social media can be helpful. These tips and tricks can make an enormous difference in your quality of life.
Remember the great things your body has given you or done for you. When the slog of this disease gets to me, I tend to get angry with my body and get so down due to its failures. But then I remember the great things this same body has done – it has given me my children, it has given me so many wonderful memories playing in and on the snow for years, it took me travelling and seeing so much of the world, and what it still can do – help people, love people, learn and grow! A lot of things can be adapted to accommodate where you are at now.
Learning to have open, honest and real conversations with my kids was the biggest lesson my arthritis taught me. Don’t hide your pain or difficulties because I promise you, they see them no matter how hard to try for them not to. Instead, talk with them and educate them. They will learn to become the most caring, kind, empathetic and helpful of adults if you give them the chance. Having this open relationship with my kids has drawn us very close and they are my biggest helpers – around the house, aiding my mobility and even helping me to dress when needed.
Advocating for yourself is imperative so as to not get lost in a health care system that is swift for life threatening conditions but not so much for those of us in the middle – not imminently dying but not well either. It keeps you and your medical team communicating and on top of new symptoms that could possibly lead to better treatments or unfortunately, worsening conditions. It also allows you to retain some power in a situation that so often feels powerless. Learning and developing clear, accurate and concise communication is the key to advocating for yourself – this includes listening to the health care practitioner. I have found listening can be the key to miscommunication if one exists – you hearing that they have not heard you!