Today marks my 17th RAnniversary (a phrase used by a fellow rheumatoid arthritis warrior in an essay about her 20-year journey with this unrelenting chronic illness. See link below).
Some people may think it’s odd to coin this time of my life as an anniversary, or anything to be celebrated. But I am proud of how far I have come on my journey filled with challenging downs and adversity. The resiliency and perseverance are worth celebrating. Life is worth celebrating. Because when chronic illness is thrown into the recipe, we call life, it forces you to look at your lack of immortality. As somber as it sounds, it’s true.
Most importantly, getting a diagnosis is worth celebrating. How many of us struggle for weeks, months, and years to get an answer? Once you have that clarity, it’s worth celebrating because then you can take the action steps needed to keep going.
Being that I was officially diagnosed at 18, even if I had symptoms starting at 15 years old (probably sooner than that subtly), I essentially grew up with this disease. Rheumatoid arthritis was new to me as a healthy person, just as much as ‘it’ was new to my body this time around. So, a lot of my life lessons came from being chronically ill most of my youth.
Today also marks the remembrance of social justice activist, Martin Luther King, and his famous ‘I Have A Dream’ speech. My diagnosis may have been as bleak as that one cold wintery day back in 2005 at Mayo Clinic, but knowing it also happened to fall on this holiday gave me a sense of hope. Like Dr. King, we all have a dream that we hold close to our hearts. For me, I have many dreams I want to see come to fruition, one of them being remission and balance in my life. Which I feel is very close to happening.
Even if I have been close to remission before, there were times when the road was rather bumpy and downright turbulent. Both the good and bad days brought lessons forward though. When I was in the midst of any turmoil, it was hard to see what I was going through as a ‘lesson’ or catalyst to my growth as a person. That exact thing is what they call ‘life throwing you a curveball’. You may not catch the ball on the first try. It’s how you make an effort to pick it up and throw it back, that matters the most.
And almost two decades later, here is what I found…
1. You are going to have to show up during times you do not want to. There were days I was so fatigued and in pain, that I didn’t want to show up to high school classes, but I had to. That was pure hell. But as weird as it sounds, that experience trained me for college and other adult responsibilities outside of rheumatoid arthritis. Then there is medication. I can’t count how many times I didn’t want to take my injection. Not even having something to look forward to like a dessert or TV show could make me motivated. On the off chance I may have forgotten to take my injection, I was kind of happy. But reality set in and once I made the effort to show up (even a day later), my body thanked me for it.
2. Self-care doesn’t have to be anything fancy or expensive.
Do your bed, wash your face, and brush your teeth. Take time away from the daily grind to do something that makes you happy. We tend to overcomplicate and glamorize self-care. There have been times when I didn’t even wash my face or shower for days because I wasn’t feeling good. But when I made the effort- even if I was in a bad flare, I felt better.
3. Don’t limit yourself.
Modify and adapt. There are ways to work around things you want to do. This even goes to healing from rheumatoid arthritis or any chronic illness. Sometimes, people have it engrained in their minds that they will always be sick. That may be true, but it may very well not be true at all. The way you talk to yourself and your body matters because it truly does listen. Believe deep down that you can heal, and keep going even when it feels like all the odds are against your favor.
4. Sometimes limitations can’t be overcome, adapted, or modified.
With the irreversible damage that I have, some things will probably never be do-able for me again in this life. I have come to make peace with it and accept what I can do instead. Try to find joy in the things that make you happy, now.
(#3 and #4 tend to mingle close together)
5. You will face things alone.
We enter this world alone and we will leave it alone. Yes, there are people in our lives who are there for us (physically and spiritually). But there will be certain things you will need to face alone. When I had a total knee replacement, I had people in my life there for me from the beginning, middle, and end. Though somewhere in between all of that, I was facing things alone. No one was on that surgical table but me.
6. Be selective of who you share things with. Not everyone will show true support.
Not every person out there in the world has good intentions nor do they want to see you prosper. That is the reality. I have learned that not everyone wants to know your struggle, to know you. But rather, to use it against you. Weeds always reveal themselves and when you live with a chronic illness, many seem to appear at once out of the blue.
I remember when I first came out that I am writing children’s book (s), among other projects, how nervous yet excited I was to share part of my purpose with the world. I shared the news on my Twitter (@risingabovera) first then other social media channels. Shortly after this, I attended a conference for an arthritis-related event. There I would meet people I had been connecting with virtually. I met someone who also grew up with juvenile arthritis (they will go nameless). We sat down at a small table with another person I never met, and started talking about social media. This person brought up how I have been so active on Twitter (I wasn’t really) and how they have seen all my recent posts, etcetera. Then somehow we talked about how you learn from experiences and whatnot. Throughout the conversation, I was listening more than talking. I can be like that around new people.
But this person suddenly said, “You can’t really learn much about life through a book.” Right when this person said this, they gave me the side-eye. Being that my eyes and ears catch everything and nothing ever passes by me, I saw the nasty look. Funny enough, I had mentioned in posts right before the conference, that one of my books is inspired by my own life experiences with arthritis. So be careful of ‘fake’ supporters in all areas of your life, personal or not. There are a lot of people trying to do a lot of the same things to stand out. I get that. Did it bother me? A little, but not for long. Did it stop me? Hell no.
7. Don’t hide your scars- visible or invisible.
This is a ‘life lesson’ I am still grappling with- on the visible side that is. I lived on the invisible illness side for over half of my rheumatoid arthritis journey. It’s like when you are in a play and you are given a role that you’re used to. Then out of nowhere, the director asks you to go act in another play you don’t feel comfortable with. Eventually, you come out of the shadows and into the light. We all know scars are beautiful, so make it a point to show people just how special they truly are. Loving yourself is a process and you will have hard days when you don’t want to look in the mirror. But the way we free ourselves from the shackles of chronic disease is by facing the mirror.
8. You know what is best for you, and if you don’t, someone will remind you.
Our bodies give us clues all the time, and I have found that once you can start paying attention to that… big decisions in life don’t seem as daunting anymore. Sometimes experimenting with what works and what doesn’t for you, leads to the path of what is the best.
9. Expecting the unexpected becomes easier with a chronic illness.
Given that the next minute, hour, day, week, or month can change for many of us living with rheumatoid arthritis…it makes change slightly easier to manage. Though I feel too much change, too little, or none at all can be rough on your mental health. I know for me at times, I just wanted things to stop so I could catch up.
10. Forgiving helps just as much as gratitude.
People talk about gratitude that and gratitude this. After all, it’s important but I also feel one big part is left out of this equation. Forgiveness. This is crucial for our health, but the hardest thing to do. Of course, gratitude is easy- you list all the things that are positive in your life. Not everyone wants to face the shadows or dig deep into emotions. With an autoimmune disease, stress plays a big role, and stress is also caused by things we are consciously or unconsciously holding onto.
11. Rheumatoid arthritis has given me the confidence to speak up for myself with confidence.
In all areas of my life. While there were times I felt anything but confident, tough times brought it out of me again.
12. Grief has no timeline.
I think I cried only once after I got my diagnosis, then I didn’t again after a while. It can be a lot to take in all at once and sometimes with the constant go-go-go that chronic illness brings it can be hard to grieve. I know people who are in remission and they are still grieving what they lost in the aftermath of ‘Storm Arthritis.’ When my dad passed away, people asked me why I was not crying at the funeral. It reminded me of how I cried alone, solo, for my disease. People may say what they want but they don’t know what happens behind closed doors.
13. The only person that needs to understand and empathize with you, is you.
We look to others to constantly understand us. To empathize with our struggle. Some people show up in our lives to do one or the other, sometimes both. Some none at all. That’s when showing up for yourself matters and external validation does not.
14. Chronic illness can make you feel weak, but you are never a burden.
Sick or not, we all have our weak moments. People with chronic illness are often viewed by society as the ‘weakest links.’ Though we are the strongest, I think.
15. Embrace the emotions that come up.
The good, the bad, and the ugly. Holding things in only makes the situation worse. Emotions centered around negative life events can make us feel powerless. Don’t be ashamed or afraid to ask for help if you need it. You also don’t have to turn your pain into power or pain into purpose if you don’t want to. Sometimes just finding inner peace with how things unfolded is enough.
16. Find a routine that works for you.
If you’re going to be focused on what this person is doing or trying, or did or had, you won’t have any time for yourself to figure things out at your own pace. Don’t close yourself off to trying new things but be mindful that all that glitters is not always the “golden ticket” to your particular health goals.
17. Back to #1. It’s OK if you can’t or do not want to show up.
Giving yourself a break, helps you to give others one too.
What are some of the life lessons you have learned from your diagnosis? Do any of these resonate with you? I would love to hear your thoughts below!
Article Referenced Above:
What 20 Years of RA Have Taught Me (RheumatoidArthritis.net)
