When There’s More Than Meets the Eye: Coping With an Invisible Illness

It can feel like a blessing and a curse at the same time. Being diagnosed with a chronic illness for which there is no cure, that’s invisible. You have the ability to mask the struggle with a smile and lead others to believe you are fine, when in fact you are not. Invisible illness can also lead those around you to not fully grasp the complexity of your health struggles or believe that you’re going through something difficult.

I feel like a veteran patient

As someone who was diagnosed with Crohn’s disease at age 21 in 2005, I consider myself a veteran patient. To this day, I often struggle with articulating high pain days or symptoms that try and interfere with my life as a mom of three kids ages 6 and under. When I had bowel resection surgery in 2015 that brought me into surgical remission, those around me who haven’t seen me hospitalized since, tend to believe I’m in the clear and don’t deal with my disease on a daily basis, they are mistaken.

When we choose to suffer in silence, the only person we’re hurting is ourselves. We are masters at pretending all is well so that we don’t make others pity us or feel they need to cancel plans or be empathetic to what we’re going through. Oftentimes we look healthy, even if we’re flaring, so people may judge us off our appearance without taking the time or energy to dig deeper.

It’s not malicious, but resentment can grow when you are battling through each day and the world around you appears to be oblivious, unless were hospitalized or posting pictures on social media from an emergency room or doctor office, the majority of people seem to forget we have a chronic illness.

Communicate and share your world

Keeping up with peers and not allowing your disease to take away from your quality of life can be detrimental when your body is speaking to you through symptoms, and you choose to ignore them. If I’m having an off day, I’ll simply say to my husband or mom, “I’m having a bad Crohn’s day,” so that they’re aware. If I didn’t share that, they’d never know. It’s a relief at times to get those simple words off your chest so you don’t have to find the energy to pretend. It’s so exhausting to try and pretend to be well, when you are not.

If you’re out with friends and not having a good day with your illness, express that. Sometimes I have friends who ask questions and show they care, other times they just look at me and continue talking about something else. This can be hurtful, but also shows you who you can be real with and who just wants the healthy, “normal” version of you.

Understand you are not aloneWhile your illness can feel so isolating at times, it’s important to recognize when you may need a professional outlet for mental health support or therapy. There is nothing wrong with this! Everyone can benefit from therapy. By sharing the emotional and mental struggles and opening up you’re releasing that tension and stress that can cause your symptoms to get aggravated.

Connect with fellow people online who live and understand your reality

I find I get the most beneficial and genuine support about my Crohn’s from complete strangers on the internet, who I’ve never met but they’re dear friends to me on social media. I know without a shadow of a doubt, I would connect with so many of my Instagram friends instantly if we lived near one another. Use those connections as your lifeline of support. You are not less than for struggling with how to share you’re sick even though you look well.

Are there moments in my patient journey when I was  grateful that my outward appearance was not affected even when my pain level was off the charts, yes. But those moments are difficult to endure for a lifetime. We all need to slow down more and put our health first and stop making such an effort to protect those around us from having to “deal” with the inconvenience of our disease. When we let go a bit of controlling who knows what about our chronic illness and when, it helps us cope with the day-to-day in a much healthier manner.