Becoming Visible: My Life With Invisible Illness

I am a face of “Invisible Illness.” I want to show you what living with “invisible” me is like, in hopes others struggling with illness know “I see you.”

So let me take off my mask

I live with multiple autoimmune diseases, many of which are often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with autoimmune diseases, like Crohn’s disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.

My invisible illness means taking upwards of 20 pills a day.

And sometimes daily injections, monthly infusions, etc. Medications for chronic illness can be huge decisions that can greatly impact your quality of life, not to mention your finances, social life, holiday celebrations & major milestones in your family’s life.

My invisible illness doesn’t show the anxiety. Knowing some weeks I have to make the choice of being able to afford groceries or medications. It doesn’t show the hundreds of denials from insurance companies, stacks of appeals and the major disappointment of never getting the medications I need to save an organ. It doesn’t show you the thousands of prescriptions I’ve taken since age 15. It doesn’t show the guilt of failing multiple medications and never knowing if the right drug will show up, of missing out on amazing opportunities and chances to achieve my goals.

My invisible illness is located in nearly every organ:

skin, small bowel, large & small intestine, rectum, esophagus, sympathetic nervous system, musculoskeletal system, and more. You cannot see the obstructions in my intestine, the ulcers in my esophagus. My face doesn't show the number of times I’ve thrown up, nor the time spent on the bathroom floor writhing in pain. You can’t see the amount of blood in my stool that makes me so anemic I’ve required blood transfusions.

Invisible are the blood clots, respiratory infections, sepsis, pancreatitis, exploratory surgeries, fusing of bones, inflammation of eyes, ulcers in the nose and mouth, insomnia, osteoporosis. This disease can cause cancers, changes in weight, my skin, my hair and my self-esteem. It doesn’t show tubes, PICC lines, NG tubes or preps for surgery. It doesn’t show anxiety, withdrawal from friends or the lasting effects of PTSD many patients experience after traumatic & near-death experiences.

It doesn’t show the self-esteem I lose each time I look in the mirror

I don’t recognize the reflection I see sometimes. I wonder where the “old me” went and what, if anything, I can do to get her back. There are times my illness becomes visible. My eyes sink in, I look visibly tired, very pale. Sometimes I’m thin, making it more apparent. Sometimes I hear rude, uninvited comments like “you look much healthier than before”, only to be left thinking “was I that fat before??”

Invisible illness doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events, and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,.

But despite my invisible illness, I'm strong.

I’ve mustered the strength to run a couple 1/2 marathons, educate myself and become an advocate for others. This past year, I was asked to be an Ambassador for an organization I have such great respect for. For nearly 4 years, I have been using the Charity Miles app, which donates to the Crohn’s & Colitis Foundation of America. It’s extremely rewarding to be well enough to train for endurance events, especially while fundraising for Team Challenge.

Recently, I needed emergency care for my arthritis. So at 2am, I called the on-call emergency rheumatologist. I explained my situation and was brushed off and told to “just get through tonight.” I hung up the phone and sobbed. I felt completely invisible. You see, invisible illness isn’t just invisible to common folk, it’s also invisible to some of our specialists. They challenge us and presume to know our pain. They may be able to see my fatigued, inflamed eyes with bags underneath them, but no one knows the struggle my insides are putting me through. Your own doctors and nurses probably don’t understand the excruciating pain of being trapped inside a body in which your cells attack themselves. If we can’t get providers to understand the seriousness of our pain, who will?

Illness changes you

When we explain to others what it’s like to live with invisible illness we often say that our "insides don’t match our outsides." We share our stories in hopes that our future will include more support and give others courage to tell someone “I’m struggling too.“ Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart because they don’t perceive our illness to be their level of “disability,” just be there.

We need you to just be with us, even in silence, so we can feel.. visible.