Invisible Illness: As Told By A Daughter

Written on February 4th, 2016

February 2nd was Rheumatoid Awareness Day, and it’s a day you shouldn’t ignore. I know there are a multitude of causes deserving recognition and that sometimes it can be tiring to observe every awareness month or day, but I really encourage you to take this as an opportunity to learn a little bit more about RA and what it means – because four years ago my family and I had to learn about it the hard way when my mother was diagnosed.

I didn’t even know what RA was before it affected my family directly, and I often wish that I could have maintained that ignorance. Facing the reality of this disease can be absolutely terrifying since someone I love so much is dealing with the symptoms and risks everyday, but raising awareness is immensely important. The truth is heartbreaking, to say the least, but it’s vital that the world starts to see RA for what it really is.

Four years ago my mother underwent a surgery to take care of some ovarian cysts she had. Nothing too serious – it went well, was as minimally invasive as possible, and none of us were truly concerned about her well being. Of course we cared about her pain levels and effective recovery, but we had no doubt that she would be fine. We were wrong.

Over the next weeks my mom began experiencing intense joint pain and fatigue. For a while we thought it was simply the surgery-recovery process, but eventually she went in for a series of tests and received earth shattering news: she had rheumatoid arthritis. It was a terminal disease. She would never be rid of it. The onset of her symptoms had been triggered by the surgery process – I feel it is important to note that her disease was not caused by surgery, but rather that she was genetically predisposed for the disease and the surgery acted as a trigger. According to the Hospital for Special Surgery, “it is the contact with an environmental agent in the genetically-predisposed person that seems to initiate the self-perpetuating inflammation characteristic of RA.”

At this time I was a freshman in high school doing my own thing, excited for the opportunities ahead. I didn’t understand my mother’s diagnosis – I didn’t understand her tears, her stiffness, the fear that we all felt. Over the next years I would come to understand this disease quite well – and I would come to love my mother more fiercely than ever before.

Rheumatoid disease, often referred to as rheumatoid arthritis, is a progressive inflammatory disease that causes damage to joint and organ tissues. It is an autoimmune disorder where the body mistakenly attacks itself, leading to severe pain, frequent disability, and increased mortality. This also means that most treatments require suppressing the patient’s immune system, thus increasing their risk of serious infections and making them more vulnerable to the world around them as a whole.

The organs that the body’s immune cells attack include the heart and lungs, and a study conducted by Mayo Clinic reported that rheumatoid arthritis patients are twice as likely to experience silent heart attacks and sudden cardiac deaths. This isn’t “just arthritis” and is not the result of the wear and tear of aging – it is a different animal entirely.

There is a mistaken perception that RA isn’t a big deal because it is “simply arthritis”, and this misconception has resulted in limited awareness, problems with disability accommodations, issues with clinical care and healthcare reimbursement, and extremely lacking research funding. I can tell you from personal experience that RA is much more serious than the word “arthritis” makes it sound. It is not a normal part of the aging process. It is a vicious disease, and it is a disease that kills.

There is no cure. The majority of patients experience less than a 20% response to current treatments. There are well-crafted commercials out there that make it seem like a monthly infusion is all you need to get back to functioning at your normal level, but nothing could be further from the truth. You can’t just take an Advil or an Aleve and go through your day – many treatments are actually forms of chemotherapy that are extremely harsh on the body. The side effects of medications can be almost as bad as the pain that comes with the disease itself. In addition, patients suffering from RA have an increased risk of many forms of cancer – some because of the medications they have to take, and some because of the disease’s own inflammation.

This is my mother we’re talking about. She’s not some faceless statistic. RA affects roughly 1% of the population, but the US spends much more on even rarer diseases with similar mortality rates. We need to increase understanding and support. We need to eliminate the misconceptions surrounding this disease. We need to talk, we need to listen, and we need to care.

We need to care because one day I might have to watch my mother be unable to button her own shirt. One day her hands might twist into deformity. She is the strongest woman I know, and not even she can beat RA.

We need research because my mom’s diagnosis has doubled her risk of heart disease, and decreased her prospective lifespan by up to twelve years.

We need a cure because this woman is my mother and I love her more than life. She deserves a million things better than this disease, and so do the countless other people affected by it day in and day out.

As outsiders we can’t see the struggle that comes with every day, especially when those who face it do so with as much strength and grace as my mom does. She masks her pain so well that it’s easy to avoid facing the reality of her disease, but that doesn’t mean that it’s not there. When an RA patient uses a handicapped parking spot or bathroom stall these is often pushback from strangers who don’t understand what it means to have an invisible illness. Just because you can’t see something doesn’t mean it’s not there. Some RA patients swell enormously, while others don’t. Some show obvious signs of the side effects of their medication, while others don’t. It doesn’t matter how each individual responds to their disease and specific treatment – what matters is that regardless of what we can see on the surface, they are still experiencing immense amounts of pain.

We can all do something to help by spreading awareness and concern, and more than anything, support. This isn’t any old ache or pain – it’s a monster in every sense of the word. But with knowledge and care and determination, I know we can make that monster a lot less terrifying.

I encourage you all to take a look at pages such as RA Warrior the Rheumatoid Patient Foundation at rheum4us.org. At the very least, help the world realize that there are invisible illnesses like RA out there that affect people deeply, even without external indicators. We never really know what someone is going through.

As for me, I am immensely proud of my mother, and certainly blessed to have her in my life. This disease will continue to be fought harder than ever, and I’m thankful for the amazing support network and medical staff that my mom and my family have. We are blessed, and we are strong, and we are doing everything we can to make sure there is a day where fear of rheumatoid disease is a thing of the past.