Invisible Illness: As Told By A Daughter

Written on February 4th, 2016

February 2nd was Rheumatoid Awareness Day. I know there are a multitude of causes deserving recognition and that it can be tiring to observe every awareness event, but I encourage you to take this as an opportunity to learn a little bit more about rheumatoid disease and what it means — because four years ago my family was forced to come to terms with it the hard way when my mother was diagnosed.

I didn’t even know what RD was before it affected my family directly, and I frankly wish I could have maintained that ignorance. It’s terrifying to face the reality of this disease when someone I love so much is dealing with the symptoms and risks every day, but no matter how much I hate the truth it’s vital that the world starts to see rheumatoid disease for what it really is.

Four years ago my mom underwent a hysterectomy to take care of some ovarian cysts she had. It was nothing too serious; it went well and was as minimally invasive as possible, and my family wasn’t truly concerned about her long-term recovery. Taking health for granted, 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, and she would never be rid of it.

The onset of her symptoms had been triggered by her surgery. I feel it is important to note that her disease was not caused by surgery, but rather that she was genetically predisposed 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. But over the next years I would come to know 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, 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 disease 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 normal aging wear and tear — it is a different animal entirely.

The mistaken perception that RD isn’t a big deal because it is “simply arthritis” has resulted in limited awareness, problems with disability accommodations, issues with clinical care and healthcare reimbursement, and an extreme lack of research funding. I can tell you from personal experience that RD 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 one 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 functioning back 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 RD 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 mom we’re talking about; she’s not some faceless statistic. RD affects roughly 1% of the population, but the US spends more on even rarer diseases with similar mortality rates. Something is missing here.

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, 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 RD.

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 better treatment 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 how much of a struggle it is to simply make it through each 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 confronting the reality of her disease, but that doesn’t mean that it’s not there.

When an RD 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 — but just because you can’t see something doesn’t mean it’s not there. Some RD 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, 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 or 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 unbelievably proud of my motherĀ 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.