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When There Is No 'Hardest Part' of Your Illness

What’s the hardest part about having an invisible chronic illness? What is the hardest part? I’ve thought a lot about this question — over years, actually. I’ve come to the conclusion there is no hardest part. It’s all hard.

It’s hard to deal with the physical pain. It’s hard to deal with the emotional pain. It’s difficult when I’m in pain and there is no one to hold me to help with the pain, when no one understands, when I look fine but actually feel like hell. It’s hard to deal with the fact that I’ll be sick my entire life. I may have good days, I may have good months, perhaps even years, but it’ll always be in the back of my mind that it might not last. Those days in the hospital, hooked up to an IV, tubes, monitors, etc. – they could all come back in the blink of an eye.

It’s hard to feel like I’m just waiting around for my health to fail again. It’s hard to push through and do normal daily activities while I’m fatigued, while I have brain fog, while I’m anemic and while no one understands just how much I’m trying. Often times they just see how little I’m doing.

It’s hard to helplessly watch as people fade out of my life, because they don’t have the extra time or effort for me, or they just can’t handle my health problems. So they do what’s easiest: leave.

It’s hard to let people see me sick. There are days when I just look bad, which for me is unusual, because I usually look pretty decent, even when I’m very sick. So on those days when I look extra rough, I avoid eye contact with people and try to get back to my beloved bed ASAP. However, in all honestly sometimes it’s good for people to see me like that, hard as it may be, because then they realize this isn’t all in my head. I am physically ill.

It’s hard when people don’t believe I am actually sick. I’ve had a few comments from a teacher, a fellow student, a friend and a family member that have stuck with me for years. It was so hard to bite my tongue and not say something rude back. It’s so hard to stand there as people look me up and down with doubt in their eyes.

It’s hard to look at my scars. Don’t get me wrong, sometimes I love them. It’s almost nice to have something to show for the six surgeries I’ve endured. But sometimes when I stand in front of the mirror and trace them with my finger, I can’t help but see the sickly little girl I’ve seen so many times in hospital mirrors. Sometimes my scars make me feel tough, sometimes I don’t even notice them, but sometimes I just feel weak.

It’s hard to cope. I have a bad habit of distancing myself from people when I’m flaring. So, I am truly sorry to those people. It hurts so bad that I see what I’m doing but don’t know how to stop it. I’m not trying to push you away, I’m just trying to survive. My body is literally fighting itself and there is nothing I can do.

Some days everything seems hard and I want to give up, but life’s a work in progress. It’s OK to stumble and fall, to cry, to feel pain; it’s all part of life. When I look back on everything I’ve been through – surgeries, hospital stays, procedures, depression, self-harm, anxiety and so much more – I know I can handle what’s yet to come.

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