I get out of bed every day, take a shower, put on my make-up, and do my hair. Some people are wondering if I want a medal for doing what every other woman does every morning? But the women that feel the way I do understand what a feat that is. And they understand the even bigger feat is that I don’t get back into bed after doing all that, but I spend the day taking care of my three children. I am currently in one of the worst flare-ups of my life. I’m on the verge of not being able to get out of bed or take care of myself, but I’m still pushing through and doing what I need to do. Yet, from the outside, I look completely normal. Having an invisible illness is a curse, because no matter how many times you express to people how bad you feel or how much pain you’re in, if they can’t see it when they look at you, they assume you’re actually fine. And if you manage to still get through some of your daily life, well then you’re definitely okay. My own daughter told me I must be fine because I’m doing things I normally do. While she’s only nine, her sentiments fit with what so many people believe.
When you don’t look sick, especially when you’re sick with an uncommon illness people don’t understand or know anything about (including some doctors), the easiest thing to do when someone asks how you are is to say fine. Then it becomes a reflex. You don’t even think about how you feel when asked the question anymore because you know no one wants to hear the real answer. But honestly, you can only get so far like that before you become resentful for always saying that you’re fine, when in reality, you feel like you’re dying inside. What I want to say is of course I’m not fine. I have multiple chronic illnesses, which bring pain and unpleasant symptoms that I deal with on a daily basis. How do you think you would feel in that situation? But thanks for asking.
Until I started searching out the community of chronically ill, I had no idea how many people were suffering daily. It makes me wonder if I’ve encountered people, maybe even people I once called friends, that suffered silently just not to have that uncomfortable conversation with me. Perhaps they were trying to avoid what they thought would be the pity conversation that I was only having with them because I felt bad. This is a terrible way to live. I’ve become lonely with my illness, isolated from all those that feel well every day. Of course, I have the support of my husband, but even he can’t begin to understand what I’m feeling. My own parents don’t recognize my pain and suffering, even though I express to them weekly what I’m dealing with. This is beginning to take a toll on my mental state. For anyone that is suffering in silence, I see you. I understand how you feel and I wish there were some words of encouragement I could offer. But until I find them, know that you’re not alone.