On April 8th, 2015, my life took an irrevocably turn upon receiving a diagnosis of rheumatoid arthritis (RA). However, the pain I experienced didn’t start at that moment; I had been suffering for quite some time before obtaining my diagnosis. The delay was contributed to numerous factors: my youth, my seemingly healthy appearance, the misconceptions and stigma surrounding arthritis and invisible illnesses, as well as my lack of self-advocacy skills. I lacked the courage to seek out what was wrong with me until it got bad.
Undeniably, a chronic illness diagnosis like rheumatoid arthritis can profoundly impact an individual’s life. Nearly a decade after my diagnosis, I continue to be astonished by the persistent changes it brings to my life and my personal growth and spirit — both good and bad. While some changes have been easy to accept, others remain a struggle. I’ve also had to embrace many of the lessons, alongside the hurt that still lingers.
Over the years, I have faced numerous challenging and painful lessons. As a patient advocate and research partner, I’ve participated in countless conferences, webinars, and educational events, significantly expanding my knowledge of rheumatology.
Yet, the insights gleaned from living with RA — the lived experience — cannot be acquired through conferences or in a medical abstract. It’s through navigating the daily impact of an incurable disease that one truly comprehends its complexity.
The Painful Lessons of Chronic Illness
These insights stem from the experiences of someone living with a serious chronic disease like mine. Some of these lessons have proven to be just as painful as the illness itself.
Facing stigmas, misconceptions, and lack of understanding
One of the most challenging lessons is the impact of stigma and judgment associated with chronic illness. Unfortunately, societal misconceptions and ignorance can result in discrimination, misunderstanding, and a lack of empathy.
Individuals with RA and other chronic illnesses often face skepticism and dismissive attitudes from those who fail to grasp the invisible nature of their condition. This can significantly affect their mental well-being and make it difficult to seek accommodation or support when needed.
Understanding ableism
It wasn’t until I personally became disabled that I truly grasped the concept of ableism. Prior to my diagnosis, I never considered myself part of a marginalized group. However, upon joining the disabled community, I found myself belonging to one of the largest groups frequently subjected to prejudice.
Ableism, by its definition, entails bias, prejudice, and discrimination against individuals with disabilities. In simpler terms, it means viewing those with disabilities as less valuable than their non-disabled counterparts.
Advocating for yourself
I’ve grown to resent the saying ‘It takes a village to raise a child’ because the contrast in support I received before and after my diagnosis highlights its toxicity.
It is unwise to assume that doctors will comprehend your situation or have full knowledge of your condition and medications. Similarly, do not expect the people around you to understand your experiences, as no matter how much you explain, some people will never grasp what you’re going through.
I’ve painstakingly learned that you need to advocate for yourself more than often.
Establishing boundaries and saying no
Before my chronic illness diagnosis, I was a people pleaser, often prioritizing others’ happiness over my own well-being, especially those who exploited my kindness. However, living with my condition has taught me the importance of advocating for myself, establishing boundaries, and confidently saying no when I am unable or unwilling to fulfill certain demands.
Coping with loneliness
Before my diagnosis, I feared solitude; now, I must face it regularly. Throughout years of coping with a chronic illness, I’ve come to understand that friendships can be fleeting. Following my diagnosis, several friends drifted away from my life—a common experience when someone is diagnosed with a chronic illness. The most challenging aspect was realizing that it was not my fault. As a result, I’ve learned to keep my social circle small.
Dealing with loss and grief
Chronic illnesses, like rheumatoid arthritis, often lead to an overwhelming frustration, making even simple tasks and pain management a daily struggle. The constant battle against the limitations imposed by the disease breeds ongoing anger and resentment, exacerbating the emotional toll. The pain and stiffness accompanying every movement serve as poignant reminders of a life once lived fully, now replaced by a challenging journey against physical and emotional obstacles. Gradually, a profound sense of grief settles in, mourning the loss of a vibrant and carefree existence.
Recognizing good and bad energy
Living with limited energy, as I do due to chronic fatigue, has taught me a valuable lesson: some people can drain you, while others can replenish you. It’s as if there are energy vampires lurking around, sapping your vitality with their negativity and constant complaints. Conversely, there are rare individuals who exude positivity and genuine kindness, refilling your energy reserves with their infectious enthusiasm and uplifting words. It’s remarkable how our interactions with others can deeply influence our energy levels, shaping our day and overall well-being.
The Silver Lining Lessons of Chronic Illness
A diagnosis of a debilitating disease like RA can teach both positive and negative lessons. Though living with RA presents its challenges, there are some silver linings. For example, the lessons learned along the way can ultimately lead to personal growth, resilience, and a deeper understanding of oneself. The amount of growth that I have done since my diagnosis is hard to describe completely, but it did indeed happen.
Facing trauma
Before my diagnosis I recognized I was hurting inside, not just from disease, but from past traumas I wouldn’t allow myself to face or heal from. After my diagnosis, I had no choice but to face these traumas, which exacerbated my illness for a time, leaving me with a need to learn to cope with them.
Learning to cope with these emotions and seeking out support systems, such as therapy or support groups, is crucial. Acknowledging the negative emotions and finding healthy ways to express and manage them is an ongoing lesson in maintaining emotional well-being.
Practicing self-care
One of the most profound lessons that individuals with rheumatoid arthritis learn is the importance of self-care. Managing a chronic illness requires a level of self-awareness and self-compassion that may not have been present before. I had to learn to prioritize my health and well-being, which often means adjusting my lifestyle and making necessary modifications to my daily routines.
Embracing resilience
Facing limitations and adjusting to a new way of life was incredibly challenging. Activities that were once effortless now require adaptation or modifications, so they don’t hurt or tire me out. I’ve had to learn how to pace myself, ask for help when needed, and find alternative ways to pursue my passions.
Understanding and accepting these limitations is a vital lesson in embracing resilience and finding creative solutions.
Having increased compassion and empathy
We cannot tell what someone is going through just by looking at them. Someone can look fine but be struggling in ways we don’t understand.
My diagnosis of an invisible illness certainly taught me to be more compassionate and empathetic toward others. I am a firm believer in treating others with kindness and respect, just as I would like to be treated.
Advocating for myself
My RA diagnosis shed light on the importance of advocating for oneself in the health care system. Individuals often learn the hard way that they must become their own advocates, seeking second opinions, and educating themselves about the latest advancements in treating and managing rheumatoid arthritis.
Finding a sense of community
Chronic illness can be isolating and overwhelming at times, but having a network of supportive family members, friends, and health care professionals can make a significant difference. Connecting with others who understand the challenges of the condition creates a sense of belonging and provides emotional support.
Sharing experiences, exchanging advice, and receiving encouragement from individuals who have a similar journey can be incredibly empowering.
Be a More Proactive Patient with PatientSpot
PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic 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.
