What's Lurking Under the Surface of Someone With an Invisible Illness

If asked, what would you envision someone who has an invisible illness to look like? Would you picture me? It’s pretty amazing what some makeup and hair products can do. To anyone on the street, they’d never be able to tell that I have these health issues lurking underneath the surface. They wouldn’t guess that I am not currently working, not because I don’t choose to, but because I physically and emotionally can’t. My extremely short pixie-style haircut seems like I’m following along with the trends, but in all reality, I chopped my hair off because my medicine makes it fall out in clumps and is thinning it. I’m different now, and I didn’t get to choose this path. It was brought on to me, and I have been left to just cope with it and adjust myself accordingly.

I’d like to give you all a small look into what my daily routine is on most days. I wake up gently, trying to process which part of my body is hurting the most and where I am going to get the energy to even get into the shower. After giving myself a pep talk, I decide that I should eat some breakfast and get those lovely prescribed pills into my system. My day starts with a cocktail of three pills, and if the fatigue and drowsiness hasn’t hit me immediately, I begin to run myself a bath with some Epsom salts. I used to shower, but my body has now come to point where it makes me incredibly tired to shower, so a bath is much easier. On the days when I am at my worst, I have to embarrassingly call my boyfriend in to help me wash my hair, as though I have “Benjamin Buttoned” into a small child needing assistance.

After that whole ordeal, I make my way to the couch, where I relax until lunch. Some days, I am unable to even keep my eyes open until lunch, which is quite sad. It’s as if I need a nap from resting. There are special days where I take 10-minute trips to Walmart to pick up my pills or pick up my Shoprite From Home order, which is my new way of getting groceries from the store. It was becoming too exhausting to actually go and shop, so I now order them online, which has become a huge savior. There are days where I couldn’t even tell you what the weather was like out, as I can only witness it from my window. My midday pill concoction consists of two pills, and I have another moment before going to bed with two more. The pills range from doing everything like helping with fibromyalgia to inflammation to depression and trying to prevent my autoimmune disease Sjogren’s syndrome from getting worse. There is usually another end-of-the-night bath I take to try and get some of the pain to ease up for the night. I lay in bed with insomnia, as I think about all that I am going through and trying to process the quality of my current life.

There are those few but very rare, exceptional days, in which I put in the effort to get all gussied up, because I have an occasion to attend. My primping is almost a self-defense mechanism for me. I figure the better I look to others, the less likely they will be to ask me questions that I do not feel like discussing. It’s my time to blend in and be there for whatever celebratory thing is going on, despite the fact that I can’t actually go all out because of the side effects from my pills or stay out late because I get so very easily tired.

At the same time, I almost want to take a makeup remover cloth to my face and have my friends really see what it is that I look like in my current state. I feel that them seeing my naked face would be a way for them to understand. Sometimes I think it’s really hard for people to grasp what I am going through because they can’t visibly see it. I’m so tired of people passing off my pain as mental illness; I am depressed because of my pain, not the other way around. That’s the hardest and most trying thing about invisible illness. If only there was a way to send a neon ink through my veins and have it light up everywhere I feel pained.

My mind and my body have limited me so much, and all I want to do is share my message with everyone that you should never make guesses or judgments about people based on their looks.

For all of the invisible and chronic disease sufferers out there, we need to dispel the myths associated with our illnesses. We need to continue to share our stories so others can understand what is going on below our surfaces. Our pain cannot be seen, but our voices can most definitely be heard.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.