When I was diagnosed with RA about five years ago, it wasn’t a total surprise. My aunt had RA, and I’d been experiencing symptoms on and off for almost a couple of years. But it was still a total shock. I didn’t want to accept the news, even though I knew I needed to start treating it right away. This is what I wish I could have told myself on that lifechanging day:
Come on Eileen: Don’t walk away from your new reality. You can’t ignore the changes you need to make to get through this and be where you need to be, for yourself and your son. It’s not going to be easy and there is no manual on how to do this but girl, you want to live — not just survive, right?
You’ll discover a new person once you get through the initial shock and trauma. Underneath it all will be a new and better you.
This is you in December 2019, writing a letter to the girl you were on April 8, 2015. If only someone said this to you that day, maybe things would have been easier at first.
I know you are scared. You never really understood rheumatoid arthritis even though it was always in front of you, with your aunt suffering. I know you have questions for her, about her deformed hands, the need for her wheelchair, what happened, what is going to happen to me? What should I do? I know her death this week [yes, she died the same week I was diagnosed —how is that for drama?] only makes this more terrifying.
It’s ok to cry and feel overwhelmed with grief.
Change hurts, but sometimes you need to make changes for your own personal gain. Especially when confronted with a life-altering chronic illness diagnosis like rheumatoid arthritis.
Don’t worry: You aren’t alone. I know having an invisible illness makes it feel like you are alone, and that maybe all of this is in your head, but that’s not the truth. You will get frustrated by the misconceptions surrounding rheumatoid arthritis, and how they make it difficult for people to understand what you are really going through. You’ll encounter some hurtful comments along the way. But millions of people in this world are going through something very similar to what you are. You aren’t too young for it; even babies can get arthritis. You are not lazy or faking it, arthritis is a leading cause of work disability in North America.
Stick up for yourself, become your own advocate. You’ll one day understand how important that is to you.
Understand fatigue and your triggers. You will soon discover your limitations because of this debilitating wall you feel inside you. It is chronic fatigue mixed in with depression and anxiety, all part and parcel of rheumatoid arthritis. Your mind says “just do it” but your body says “nope.”
You will find this to be one of the most difficult parts of your life, but you will learn to adjust over time and with the guidance of health care professionals, exercise, and diet. Don’t be afraid of exercise. Once you awkwardly find your way with it, you’ll be asking yourself why you never did this before. Motion is lotion! When you feel that stiffness, get up and get moving, girl.
Watch your depression. It’s not shameful to seek for help or take medication. The people who left you behind are not worth your tears. You are going to feel things you’ve never felt before, feel them. Let those emotions roll. Give yourself time to grieve, adjust, and learn. Don’t let anger get the best of you and don’t let guilt consume you when you need help.
Understand fatigue and your triggers. You will soon discover your limitations because of this debilitating wall you feel inside you. It is chronic fatigue mixed in with depression and anxiety, all part and parcel of rheumatoid arthritis. Your mind says “just do it” but your body says “nope.”
It will take a team to treat you, not just a rheumatologist. Each one plays an important role in your illness; after all, rheumatoid arthritis is more than just joint pain. You have to treat more than just your joints. Keep in mind, most doctors just treat the illness. They do not live with it. They don’t have the lived experience. You may find yourself reaching out to professionals like an occupational therapist, social worker, psychiatrist, rheumatology nurse, registered dietitian, physiotherapist, and more. Not to mention specialists like cardiologists or ophthalmologists. Honestly, the list of health care professionals you are going to meet will be never ending.
Do your labs and get your tests done. Don’t let them sit undone. You need to keep on top of your appointments. Stay organized, keep a journal. Write lists galore to tackle those damn memory issues. Try out different apps to help you stay on top of things. You’ll find your rhythm in time. Learn to become an “adherent patient,” it comes with better outcomes than being a non-compliant or non-adherent patient. Your disease is not one to leave untreated. You’ll understand when you give up medication for six months because the side effects get too real for a time.
Don’t feel shame for being fearful. Keep an open and hopeful mind. Pain will make you desperate and vulnerable, so don’t fall for marketing scams or bad advice. Educate yourself about your illness and the symptoms, side effects, medications, and comorbidities that come with this. It’s better to be prepared than surprised, even with how scary it can sound.
You will shine, gain wisdom, and connect with people in ways you never did before. You will learn to love more and understand the world with new eyes.
Make each arthritic step moving forward count.
Sincerely,
Your Future Self
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Keep Reading
Arthritis: How CDC Improves Quality of Life for People with Arthritis. Centers for Disease Control and Prevention. https://www.cdc.gov/chronicdisease/resources/publications/factsheets/arthritis.htm. Published January 30, 2019.
