We’ve probably all heard the phrase “she suffered in silence” a time or two in our lives, but how often have you looked around and thought about how many people in your circle are suffering in silence every day? As a society, we have thankfully come a long way in recognizing mental illnesses which make up a large portion of those suffering in silence. Anxiety and depression are probably the top two that come to mind and we have become very accepting of and proactive in treating those (as we should), but what about other silent illnesses? I often think of them as the “underdogs” in the illness world and would like to shed some light on at least one of them that is personal to me.
I have an autoimmune disease.
Chances are someone somewhere in your circle also has an autoimmune disease. Autoimmune diseases affect more than 50 million Americans every day; 75% of those affected are women. There are more than 100 autoimmune diseases ranging from Lupus to Crohn’s Disease to Celiac Disease to Rheumatoid Arthritis. Autoimmune diseases are among the top ten leading causes of death among American women. Autoimmune diseases are chronic and can often lie dormant for periods of time. They can be triggered by environmental factors, medications, vaccinations, and stress. My story begins exactly that way.
About 12 years ago, I was sick. I was sick all the time.
I went from flu to strep to ear infections to every other virus known to man, and then would start the cycle all over again. Sure, I was a teacher, so I was around a lot of different viruses, but I had been teaching long enough to build up quite an immune system and this sickness just felt…different. I began putting on weight, but it was more of a swollen look in my face, hands, ankles and feet. I was incredibly stressed as I was working full time, raising a five-year-old, and heading into a divorce. That stress triggered something in my body that I was, at the time, completely unaware of.
This ping-pong health of mine went on for about three years until I began having excruciating pain in my neck. The pain was so unbearable that at times I would have no other recourse but to scream out in pain and spend the rest of the day on muscle relaxers and pain killers. I knew it was time to see a doctor. The first doctor I saw wanted to do a major spinal surgery pretty quickly. I didn’t feel right about it. Things just weren’t adding up, so I went to my most trusted doctor at the time (my OBGYN) and he asked me if I had ever been tested for Celiac Disease. I told him no and to be quite honest, I had never even heard of it. One blood test and two endoscopies later, it was confirmed that I did have Celiac Disease, an autoimmune disease that affects the lining of the small intestine and is fueled by all the foods I would eat on a daily basis. My body was in a constant state of toxicity and was in “attack mode” 24/7 against my own immune system. Now that I knew better, it was time to do better.
My journey to healing myself wasn’t easy.
I was diagnosed at a time when “gluten-free” eating was becoming popular. Some might argue that it should have been easier that way, but when treatment for your disease becomes a “fad,” it can also make you feel like your disease is a fad as well. I can remember people making fun of gluten-free foods on menus, waiters rolling their eyes when I would order gluten-free food, and every time I went somewhere other than my home to eat, I felt like a burden. That feeling became so overwhelming that I stopped eating for a period of time and lost a lot of weight because I didn’t want to impose on people at parties or restaurants. I didn’t look sick. I didn’t act sick. Why was I being so difficult and picky? No one knew that I felt like an inconvenience. No one understood why I pulled away from parties and social events. No one knew that my body was experiencing immediate miscarriages while we tried to get pregnant. No one could see the swollen and rock-hard stomach under my loose shirt because of cross contamination at a restaurant. No one saw the scabs all over my scalp from an allergic reaction. My illness was and still is…silent…and yours might be too.
My autoimmune disease is manageable, and I am so grateful that I am otherwise healthy. I still have bad days, and I still have symptoms that I attempt to manage on a daily basis, but I also still struggle with the stigma of having a silent illness. It can almost feel as if my illness doesn’t matter because it isn’t heart related, or cancer, or something bigger. My challenge to you today is to think of those people in your life who may be struggling with a silent illness. Have you noticed a change in them? Have they pulled away? Have they been acting “weird” or “not like themselves”? Reach out to them. Let them know they matter. Let them know they are not a burden or an inconvenience.
Be slow to judge and point fingers. I make decisions all the time in the best interest of my health and in an attempt to keep my symptoms at bay. Vaccinations backfire on me and make me terribly sick, so I haven’t gotten a flu shot or any other shot since 2015. It’s not because I’m being stubborn. I choose not to attend certain events or eat/drink certain things for fear of allergic reactions. It’s not because I’m being picky. I often stand in the lobby of my son’s hockey games because long periods of extreme cold cause flu-like symptoms in my body that take me days to recover from. It’s not because I don’t care enough to go into the rink and watch. Be careful as you make assumptions about the choices people make. They very well may be battling a silent illness you know nothing about.
Lastly, your health matters. If something doesn’t feel right, continue to seek answers from professionals you trust. You are the expert of your own body. Trust your instincts and advocate for your own health.
