Almost a year ago I was sitting on my bed working on schoolwork when my phone beeped and I looked down to see an e-mail from my rheumatologist’s office. Whenever new updates would come into my online profile (labs, doctor’s notes, prescriptions, etc.) I would receive a notice on my phone. Seeing it was my updated lab work, I hopped on to see what I could find. I wasn’t expecting much. For months I had been the patient who had all the symptoms with absolutely no sign on her blood work that something was wrong. Well that morning the first definitive blood work answer was shown and it was the one that I had been fearing all along: Rheumatoid arthritis.
I was 10 when both my feetsies went under the knife to clean things up and lengthen my tight and sore Achilles tendon. I remember so many physical therapist visits, and lots of visits from friends and family after surgery. They were so kind and so supportive.
When I was 14 years old my back pain was at what seemed like its peak after a basketball game. While I was laying on the floor in my bedroom icing it, my brother came in and sat next to me and talked while I cried, worried I was never going to play again.
I was 15 when I stopped playing basketball, and I had so many people reach out to me–my parents were my rock, and one of my teammates moms (who was a second mom to me) met me at the park one day and just talked to me about how I was doing the right thing taking care of my body, and assured me how much she cared and loved me.
I was also 15 when I dropped to the floor in a horrible muscle spasm and couldn’t walk. My mom and my friends helped me crawl over to the rug where I laid in excruciating pain. They were there for me and talked me through it.
I was 16 when the shoulder pain came into play. I immediately texted my kind and understanding mom that my pain wasn’t getting any better. She made the doctor’s appointments, attended with me, and sat by me through my physical therapy and then subsequent surgery.
I was 17 when the pain moved into my hands. My sweet then boyfriend, now husband, would rub my aching fingers, and cuddle me through the tears. My mom attended the doctor’s appointment with me where we nervously awaited the answer on blood work, with a negative for rheumatoid. My mother was so relieved, and in that moment I realized what needed to be feared was rheumatoid and ever since then I was scared of it.
Fast forward to now, I’m newly 21, and that’s what the reality is.
I have never felt short of support, love, or understanding throughout this process. Sure, there have been countless times where I have felt as though my feelings and pain weren’t viewed as credible. I think we all go through those moments as patients of arthritis. There were times I wondered if it was all in my head because that is how the doctors were treating me. I didn’t have any visible signs of pain. You couldn’t look at me and say, “Her life must be really hard because she looks as though she’s in so much pain.” Nope. I was a walking, breathing, I’m going to push through this as much as I can, kind of person.
But then I’d crack. In those moments where I would disintegrate into a puddle of tears I felt like no one really knew what was happening or what I was feeling. People just thought I was having a bad day, and sure those days were bad. What they didn’t quite realize is that I would try so hard every single day to walk and act and talk like the pain wasn’t affecting my mood or the way that I felt. It came to a point (usually on Sundays for some reason) where I would just collapse, and feel as though I couldn’t move on any further.
It was hard for me to explain this to others and not feel like a huge burden. I didn’t want my chronic pain to become their burden. That riddled me with guilt.
So when the rheumatoid arthritis diagnosis came in just almost a year ago, I only told who I felt needed to know. My family, my in-laws, my few close friends–they all got the text–a pleading for prayers in the moment where the blood work said positive and I had to look my fears straight in the face.
The love came pouring in, but I struggled to accept it all. I felt guilty that these people had to worry about me because of the trial that I was given. So for months I relied on my husband alone, and didn’t really express to others or open up about it to anyone. I hated being the center of attention and I hated being noticed for this disease.
However in July 2014 (I was diagnosed in May) my eyes were opened during my sports conditioning class at college. I was given the assignment to write a research paper about something sports related–a research question to be specific. My mind immediately popped over to rheumatoid. I wanted to be an advocate for it somehow, and I wanted to tell the story of what it was like, but at that moment I was still trying to deal with my fear and I didn’t feel 100% ready to say anything.
My professor told us before we turned these in that she would select a few individuals to highlight their paper in front of the class. I didn’t really think anything of it, I was just banking on writing this paper up really quick and getting a good grade. Guess whose paper was chosen? Mine. I stood up in the front of the class shaky and stated how I wrote my paper on rheumatoid arthritis and endurance training. I then told the class, “The reason that I am interested in this topic is because I have rheumatoid arthritis.”
It was the first time I had ever said it out loud, and every head that was looking down now stared at me straight in the face. When I went to go sit down people’s eyes stayed with me, and at that moment I felt like I had taken a bulldozer to a wall, and those on the other side were starting and wanting to understand. I wrote a little tweet like this:
People were listening.
People wanted to understand.
However it took me until October to finally come out and say: I have rheumatoid arthritis, and that is my struggle. And ever since that moment, and since I’ve started writing about it I have had so many people ask me questions, and really want to know how I am doing. I feel at times as though I have been stripped to the core, that I am as vulnerable as a crab with no shell, but then I realize that my struggles and my story may be helping people not only understand but cope with their struggles and their bits of adversity.
Its been a mistake on my part to squander, and feel embarrassed for the highlight of my daily adversity. There are people out there that care. And every time someone asks me how I’m feeling I tend to skirt it under the rug and just say I am fine. People want to know, and people should know what a life with arthritis is like.
My acknowledgement of my bad habit to say I’m “just fine” came out in this instagram post that read:
“I have a lot of people ask me what a normal day is like for me and how I am doing with rheumatoid in my life. My answer depends on the day. If you had asked me any day this past week I would’ve said that at that moment things were good and wonderful and really great. Ask me today and my eyes probably would’ve welled up with tears because its been hard. I’ve got swollen fingers and wrists that don’t move quite like they used to. My fingers don’t want to grip or hold onto anything for longer than three seconds. I’ve got an achy back that is pinching nerves and giving me a monster headache. And I’m tired. The fatigue is kicking my butt. To be honest I wanted to lock myself in the bathroom at work and have a good cry. But life keeps moving and keeps happening. Who knows, tomorrow could be amazing, and that’s what keeps me going.”
I can’t even explain the outpouring of love I got from this post. I got a lot of “Thank you’s”. One of my dearest friends commented and said that she had needed to see this because her mother has rheumatoid and this helped her to understand what she was going through.
People want to know.
So how I communicate my rheumatoid to my family and my friends is like this:
Every single day is different. You may look at me right now and I may look fine, but I have a pounding headache or I am really exhausted. My fingers may be swollen and ache, or my feet might be cracking and grinding, but you just can’t see it. The pain is a very real thing in my life, and it is distracting and draining. I may be feeling a lot of fear for what my future holds. I may be feeling really hopeful. But it is my reality, and it is the life that I live every single day.
I love when I tell my husband about a flare or I call my mom they both sympathize with me and they let me hurt and be sad, yet they always give me hope for the next day because with rheumatoid, who knows what tomorrow may hold.
Now that I’ve explained that to them, they know, and they are better prepared to scoop me up on the days when I seem to fall into an abyss of pain and stiffness.
People want to be there, and I wish I could hug every single one of them.
People want to understand, and so I’ll tell every one of them.
This is my life with rheumatoid arthritis, and this is my reality. Welcome.