I didn’t wake up one day suddenly feeling sick. It wasn’t a sudden swelling of my joints or pain in a specific area that prompted me to contact my family physician. Rather, it was a gradual increase in symptoms all over my body that led me to request some tests.
To understand how I was diagnosed with rheumatoid arthritis, I need to take you back to the start of my journey with chronic pain.
The Start of Symptoms
In 2004, shortly after my high school graduation, I started schooling to become an esthetician. By the age of 20, I was working in the field and providing a range of services such as pedicures, manicures, facials, body massages, and waxing. I loved my job and I was fairly good at it. I could handle the long hours and the extensive physical demands.
During my training, my instructors had warned us about the potential for repetitive injuries and back strain that many estheticians face in their careers. It wasn’t long before I started experiencing pain, around the age of 23 or 24. I attributed this pain to my job, as I had been warned it could happen to me. I even asked my bosses not to book me for massages due to the pain I experienced afterward.
When I raised these concerns with my family physician, they simply attributed it to carpal tunnel syndrome. I was told to wear a wrist brace at night, but I found the braces uncomfortable due to swelling and tightness. At that time, I was in my early to mid-twenties and didn’t believe anything serious could be wrong with me. I also struggled to advocate for myself and communicate my symptoms properly to my doctor.
I began blaming myself for how I felt. I always felt tired and relied heavily on coffee. It took weeks for me to recover from even minor illnesses, and I had trouble sleeping due to pain. I felt foggy and stiff each morning, which made it increasingly difficult to get ready. No matter how much sleep I got, I still felt tired.
I began blaming myself for how I felt. I always felt tired and relied on coffee more than I would have liked. It took weeks for me to recovery from even minor illnesses, and it felt impossible to get a good night’s sleep due to pain. I felt foggy and stiff each morning, which made it increasingly difficult to get ready in the mornings. No matter how much I slept, I still felt tired.
Over time, the pain spread to other joints, such as my knees, neck, and hips. I also began struggling with my mental health and blamed myself for not being able to snap out of it or stay positive.
Pregnancy and Childbirth
When I was 26 years old, I discovered that I was pregnant. However, by the time I realized why I had been feeling so unwell, I was already six months into my pregnancy. I was accustomed to irregular periods, so I didn’t consider it a clear sign that something was going on with me.
The last trimester of my pregnancy was quite challenging. I experienced severe fatigue, swelling, and pain. My doctors were monitoring me for preeclampsia, but they were perplexed as to why I didn’t meet all the necessary criteria. I eventually had to undergo an emergency c-section at 37 weeks. I thought that my pregnancy symptoms would go away during my year-long maternity leave, but unfortunately, that wasn’t the case.
Instead of going away, my symptoms only increased and changed me.
Returning to Work
I returned to work after my maternity leave, but was shocked that the uncomfortable symptoms I attributed to pregnancy were persisting. The pain, swelling, fatigue, depression, trouble sleeping, consistent infections, and cognitive dysfunction would go up and down, though more often than not, they were on the rise.
The job that I had once excelled at became more and more difficult to manage. I was physically exhausted and couldn’t manage an eight-hour shift anymore. After only a few hours of work, I would become lethargic, forgetful, foggy, and easily confused.
Even wearing simple shoes like my Converse sneakers caused me foot pain. Cute high heel shoes, which used to be my go-to footwear, were now out of the question. I believed that pregnancy had permanently changed my feet.
Performing a pedicure or facial would leave me exhausted and in need of rest. I started taking longer to do my work, and clients began to complain about my forgetfulness, messiness, or tardiness. After services, I would retreat to the back room, in tears. I felt like a failure and I was in physical pain.
I was also struggling with cystic acne, severe depression, and always felt hot and feverish. I thought it was due to my post-pregnancy hormones, and that postpartum depression was clouding my mind. I thought the symptoms would go away, not increase as my son grew older and I settled into motherhood.
The Realization That Something Was Seriously Wrong
Walking to the train station, which was only a flat 5-minute walk, was too much for me. Even grocery shopping was a struggle. My hands and feet always felt like they were on fire, and even the touch of people sitting next to me on the bus caused pain. I found myself resting my hands on nearby windows because the coldness felt good on my burning hands.
If I caught a cold, it would take weeks for me to get past it. Over-the-counter painkillers like Advil or Tylenol had no effect on me. I could drink several cups of coffee or five-hour energy shots and still nap. I tried various diets and exercise to feel healthy, but nothing seemed to alleviate these mystery symptoms. I tried diet after diet to feel healthy, but nothing seemed to alleviate these mystery symptoms. I tried exercise, but it was too painful or I had trouble getting started because I was too exhausted.
It felt like more than just pain, and the pain wasn’t going away no matter what I tried. I couldn’t believe it could be carpal tunnel syndrome; during my pregnancy, when I complained of hand and wrist pain, I was told my carpel tunnel should improve during maternity leave. But it only got worse.
A co-worker suggested I look up rheumatoid arthritis (RA), as a friend of hers had been diagnosed with it. I turned to Dr. Google, and my heart sank as I realized the symptoms of RA matched what I was experiencing. It also dawned on me that my aunt was living with this disease; she was wheelchair-bound and her hands were curled in from the disease.
At that point, shortly after my 29th birthday, I knew I needed to see my family physician to ask for a rheumatoid arthritis blood test. Although the appointment was a few weeks away, I couldn’t wait that long without having to tell my work that I needed to go on medical leave until I figured this out.
The thought of this happening to me at only 29 was confusing. Wasn’t I too young for arthritis? How could arthritis be an autoimmune disease? I was about to learn much more about the disease that was manifesting inside me.
Little did I know that I would never return to my job again after that. My last day working as an esthetician was March 6, 2015. A month later, I found out I would probably never be able to go back to that job again.
My Diagnosis and Becoming Disabled
When I approached my family physician to request the rheumatoid arthritis blood test, she took a look at my joints and suggested that I was too young and did not have enough swelling for rheumatoid arthritis. In her opinion, she suspected it may be fibromyalgia. The blood work was still requested, and I was referred to a rheumatologist.
Fortunately, the wait to see a rheumatologist was not very long, as a new one had recently moved to town. In April of 2015, I was diagnosed with seropositive rheumatoid arthritis, the disease I had suspected was causing me all this grief.
It was a bittersweet moment for me. I was happy to finally have a diagnosis and to know that my pain wasn’t all in my head, but I was sad to be living with a serious autoimmune disease that forced me to go on disability at the young age of 29.
It took me years to learn to advocate for myself and request the proper exams to be taken. I strongly suspect that because I was young and looked healthy, no health care professional thought it was necessary to run tests. They just assumed my pain was related to my job or lack of exercise.
The Grieving Stages
My diagnosis came with many losses. I lost my health, my ability to work a normal job, and the activities that I enjoyed. Slowly, friendships fizzled out as I couldn’t make it out to socialize anymore. My life was never the same after my diagnosis, and I struggled to accept my illness. I fell into a deep hole of depression and anger. I thought my life was over.
Many people around me did not understand what I was going through. I wasn’t the only one confused as to why I didn’t look sick yet felt so sick. How could I have arthritis at such a young age? Why is arthritis considered a serious illness? I had to learn how to advocate for myself because I was now living with an invisible disability.
I often heard phrases like “But you don’t look sick” or “It’s just arthritis.” Peers would diminish the severity of my disease and my health because of the stigma and misconceptions surrounding arthritis. I felt like an imposter and drama queen.
Finding the Right Treatment Path
There are many different treatments available for rheumatoid arthritis, but not all of them work for everyone. Finding the right treatment was a challenge due to regulations on expensive drugs. After spending a year on the mandatory less expensive treatments, I felt frustrated with the lack of relief and the side effects. I didn’t know how to communicate effectively with my rheumatologist yet, and I didn’t understand how my medications affected even common illnesses like the cold.
At one point I gave up. I stopped seeing my rheumatologist, stopped taking medications, and tried to live my life as if I didn’t have RA. However, after a few months, I realized that I couldn’t function without addressing this disease. I made an appointment with my rheumatologist, who listened to my concerns and struggles with medications. She let me know I was not alone in my emotions or my behaviors, it was common to want to give up on the treatment path when the medications fail you over and over.
The big turning point for me was when my rheumatologist introduced me to biologics and an integrated treatment plan. I learned that it took more than just medication to treat this disease. I needed the help of a physiotherapist to stay active, a clinical social worker to address my mental health, and an occupational therapist to help me manage daily life with this progressive disease.
Discovering My Chronic Illness Comes with Friends
Living with chronic illness often means living with multiple conditions, and this was a difficult and painful lesson for me. Once I was diagnosed with RA, I started seeing many doctors and undergoing tests that uncovered other health issues I had been living with, including osteoarthritis, fibromyalgia, anxiety, depression, and endometriosis. It’s common for comorbidities to be present with RA.
Adjusting to Life with Rheumatoid Arthritis Today
It has been eight years since my RA diagnosis, and I’ve learned many lessons during this time. I’ve learned how to pace myself, manage my mental health struggles, say no, and self-manage my condition. While my life may not be the same as before my diagnosis, it’s not over either.
I’ve learned to adapt and manage my disease. The cause of my RA is no longer a concern for me, as I cannot change the fact that I have this disease. However, I can change how I live with it. Living with rheumatoid arthritis is still a challenge, but with the support of my doctors and arthritis organizations, I am doing the best I can.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
