My Pain is Present…Just not Apparent

The Measure of Pain

Did you know that there are 27 joints in the human hand? I did, by going through extensive research for rheumatoid arthritis. They say that the start of solving a problem is by defining it. You need to have the language, and it needs to be given a name. At first, I didn’t know what’s wrong with me. I just knew that I was hurting. It started in my back. And at first, I thought it was nothing. I thought that everyone dealt with pain at the same level that I did. No one talks about that. About how pain is not an objective measurement for everyone. Someone else’s normal level of pain can be someone else’s level of unbearable level of pain. It’s crazy to me that I must explain how much my pain plays a part in my life. I don’t look like a person who has had to use a cane before. My body doesn’t look decrepit. I have the body shape and type that society has typically put on a pedestal when it comes to female beauty standards: the hourglass. But none of these changes the fact that I struggle to use a can opener, or that I’ll get tired from doing basic tasks that many people don’t even think about. Think about how often we type in a day. Or open doors. Or cook and clean. And all the while having throbbing pain. Or feeling stiff and swollen.

Using the Spoons

                I learned a long time ago that to protect my energy, my strength, and my sanity, I had to preserve my “spoons”. My spoons are a symbol of my own threshold and bandwidth. We give our “spoons” away all the time. We give them at work, at home, to our family, even to strangers. And we give them away each time we do a task that is particularly strenuous to us. For me, that might be cooking dinner or styling my hair. To others, those may not seem like a big deal at all or take up any time or energy.

But here’s the thing: we all have challenges and things in our lives that don’t come easy for us. For many of us, those challenges are not visible to others. We all must use our spoons differently. And yet, we still sometimes forget to empathize with each other. We think that person is lying or exaggerating. If someone has a mental health disorder and might be suicidal, for instance, it can hard for some people to believe that person because they “look fine”, or they were just with them and they “seemed happy”. My RA and fibromyalgia are a physical pain, and there are times where I have “good days”-days with less pain. So, when you see that person who has depression and might feel suicidal, maybe they were having a good day that day, despite their pain. Sometimes those of us who are in pain, whether physical or emotional, try to hide our pain because we don’t want to be a burden or viewed differently. There’s a saying that this therapist Dr. Jen Wolkin has said multiple times on her social media posts. She says something like, “People rarely fake being sick. They fake being well”.

Believe Us

                Well, I wasn’t faking my symptoms and what I was telling the doctors. But it still took a long time for me to get diagnosed and get treatment. I’m not saying this to ridicule doctors or healthcare professionals. There are loved ones in life that have not always realized the severity of my illnesses and the limitations. I just want more people to believe those of us who have painful invisible illnesses. It usually takes a VERY long time-YEARS even-for a person to get to the point where they know what they’ve been struggling with but didn’t know what it was, whether it was a learning disorder, neurological disorder, or physical or mental health disorder. Not to mention the money that adds up from medications, tests, and co-pays for doctor visits and specialists. So, for someone to go to the lengths to try and get the help and comfort they need because they’ve been in pain, and then for someone to basically tell them….”Nah, you’re fine”. Huh?? Lol It’s just a weird thing to invalidate someone about. Whether it’s from doctors, friends, family, significant others, or acquaintances, it’s still hurtful and unnecessary to do.

                Fibromyalgia was not always recognized as a real medical disorder. I had friends who worked in the doctor’s office that said that the doctors would say fibromyalgia if they didn’t know what else a patient could have. But because many didn’t think fibromyalgia was real, the pain was addressed. To say that a condition isn’t real is to discredit someone else’s pain and struggles. It made me start to even question my own symptoms, until I saw I connected the dots with my other family members like my mom and grandmother and their experiences.

                Everyone is going through something. And regular life stuff can we hard enough, and most people tend to be people hard on themselves. Let’s not add to it then. Let’s not act like we will get a prize in our suffering, or by playing a “who can tough it out the most” game. The prize is living your best life and doing what you can to help others. The real prize in life is figuring out the things that work best for you on how to be the healthiest and happiest you can be. I think our world glorifies pushing ourselves to the breaking point too much. In some cases, it’s not best to “push”. Sometimes it’s best to “preserve”, and to remind ourselves that just because we can do it doesn’t mean we should do it. You don’t always have to prove how tough you are to others. You know how tough you are. And your pain does not have to be apparent to others for it to be present to you.