Living With Rheumatoid Arthritis as shared and written by our reader and featured writer, Kristin Johnston . Kristin is also the creator of Chronically Kristin, a blog featured by ChronicIllnessBloggers.com
I was able to focus on my overall wellbeing and self-identity and self-worth and that is where I found acceptance.–Chronically Kristin
My diagnosis: Rheumatoid arthritis and…
Rheumatoid Arthritis, Spondyloarthritis, Fibromyalgia, Chronic Fatigue, Chronic Costochondritis, Chronic Rhinitis, GERD, Anxiety, Depression
What were your symptoms?
Rheumatoid Arthritis is an autoimmune disease that occurs when your overactive immune system mistakes healthy cells and joints in your body for foreign bodies it needs to “attack” or “fight off;” this causes joint pain, swelling, inflammation, permanent joint damage, and other full body symptoms. I was diagnosed about 10 years ago at age 22 not long after I graduated college. I started getting severe hip and lower back pain that ended up causing mobility issues while it took around 6-8 months to find the cause and make my way to a rheumatologist.
Can you share with us the diagnosis story?
About ten years ago, doctors told me that I had a very severe case of mono, which is caused by the Epstein Barr virus. Many adults get this at some point and, in a lot of cases, it can create symptoms of chronic fatigue. If I look back to that time, I never really felt healthy again after that. I developed hip pain, back pain, and an overall malaise, even though my x-rays appeared normal. Initially, I received steroid injections into my sacroiliac-joints in my lower back, about 2 rounds of these, but they never really made much of a difference in my symptoms.
I finally went through a full body scan with contrast that found evidence of severe inflammation in my pelvis, lower back, and hips – but I was only 23 at the time. This prompted doctors to send me to a rheumatologist who immediately was certain an autoimmune disease (or 2-3 as we would learn) was the cause of all of this.
I was eventually diagnosed with Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue, Chronic Costochondritis, and have also always dealt with GERD, Anxiety, and Depression. As I always like to say: chronic illnesses never like to party in your body alone! Most autoimmune diseases end up causing or forming one or more different conditions.
At that point doctors referred her to West Michigan Rheumatology, where she met with Dr. Head, who grew concerned that an autoimmune disease might be causing the inflammation.
Most autoimmune diseases end up causing or forming one or more different conditions.- Chronically KristinTweet
What lessons did you have to learn while living with rheumatoid arthritis?
I like to answer questions like this with how I would talk to chronic pain as if it was another human being, or as if I was writing a letter to chronic pain. A piece of a post I have on my personal blog reads:
I could start out this letter to you by just throwing a couple middle fingers in the air and saying “f*&k you.” In fact, for a long time that’s really all I wanted to say to you – and some days, it’s still all I want to say to you. – Chronically KristinTweet
I’ll admit, it took me awhile to work through the stages of grief at your arrival. At first, no one, not even you, Pain, was going to tell me that things were changing. You think you’re going to waltz into my life at 22 and just flip tables and go nuts? I think not. That phase was a fun mindf*&k to transition into. Because quickly afterwards came grief and acceptance, but not without some hard work.
Being that ever so overwhelmingly self-aware person that I am, I pretty quickly realized a couple things about you, Pain, and about what our relationship was going to be like:
You weren’t going away. When they say chronic pain and chronic diseases, that pretty much means for life.
You were going to impact my day to day life and dealings whether I liked it or not, so it was up to me to accept that.
You were also going to throw my mental health into a spiral while we were at it.
The best thing I could have done for myself at that time was exactly what I did: throw myself into therapy and learn how to deal with these cards I was dealt. Pain, if you and I were going to live together and be in a committed relationship, some boundaries needed to be established, and some real talk acceptance needed to be learned.
Years of hard work landed me where I am today and how I feel about you now. Our relationship has grown, evolved, and ultimately settled into a comfortable companionship over the years. That’s not without discomfort; after all, we are talking about you, Pain. However, I think we have a mutual respect for each other now. And on the worst days? I can still credit you and think of you with an inkling of positivity.
You see, Pain — I’m actually eternally grateful for you. You’re a real piece of work, but you’re my work. The evolution of my early adulthood from an invincible college grad to a vulnerable, defenseless young professional and multiple chronic diseases fighter is something I look back on with awe, gratitude, and a hell of a lot of grace and respect. I have no doubt in my mind I would have turned out well without you, but I’m pretty damn grateful for what and who I turned into with you. In fact, it’s best said by the tattoo I got down my spine:
Pain from today is Strength for tomorrow.- Chronically KristinTweet
I applaud you, Pain, for your perseverance in my life. I’ve thrown the book at you with treatments and procedures and medications, and you allow yourself to be tamped down, to play second fiddle to the rest of my life. Nevertheless, you sneak yourself into my world just enough to keep me humble. One of my favorite qualities is my strength, my perspective on chronic illnesses. I owe a majority of that maturity and perspective to you, old friend.
So thank you for being what I needed in my life to transform me into the person I am today. Thank you for keeping me humble — just when I think I have you figured out, you knock me on my ass again just to stay relevant. Thank you for preparing me and giving me a perspective that helps me view the world with both grace and realism. And best of all, thank you for forcing me to take stock, to prioritize the right things in life, and to forever work towards balance.
What steps did you take or how did you cope/find acceptance?
One of the biggest steps I recommend is time. It takes time to get to the level of acceptance I’ve achieved. However, I also recommend the following to just “put the work in:” therapy, research, and grace.
Therapy is good for everyone – I highly recommend therapy whether or not you have had anything positive or negative occur in your life. Research can be good or bad – don’t go down the rabbit hole of the internet, but information is your best friend.
You have to be your own patient advocate. And grace – always, always give yourself grace and cut yourself some slack.
What advice would you give to someone struggling with their health or journey?
- Keep going – you will get to a point of acceptance and strength that will leave you in awe of yourself.
- Give yourself grace – prioritize your health both physically and mentally; you will never regret putting your health first and giving your body and mind what it needs to rest and/or heal.
- Lean into online communities – there are COUNTLESS options online; find the one that feels like your tribe and speaks to where you are currently. That means that your online communities might change over time – mine certainly have!
What do you wish others knew?
The biggest lesson I’ve learned from having autoimmune diseases is humility and strength. As I’ve mentioned, it actually makes me grateful to be sick. I’m so proud of where I am because of what chronic pain and disease teaches you and really, forces you, over the years.
Nevertheless, I wish others knew more of what goes in day to day. Because these are “invisible” illnesses, it can be hard for others to understand exactly what is going on, and exactly how bad symptoms are every day.
I’m so proud of where I am because of what chronic pain and disease teaches you and really, forces you, over the years.- Chronically KristinTweet
Where can we find your blog?
Show Kristin how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!
We all have to remember our health journeys are different. Remember to give yourself grace during your journey and send love to others along the way.
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