Making it through the day with an overactive immune system is exhausting. You are trapped in a body that seems hard-wired to misbehave. You look and feel very different than you once were. You find many small things to celebrate. You purchase colorful new shoes because your feet and ankles feel better, you laugh at inane jokes just to feel alive. You hide your pain as much as possible so you can still seem fun and lively, this takes a lot of effort. Normalcy is an adopted attitude.
When you are in your twenties and diagnosed with a lifelong disease, it is a shock that is very difficult to accept. You have medicine bottles everywhere and are told to take this pill four times a day, the next pills you take eight of once a week, one pill morning and night, and another only at night. Disbelief sets in and you are sure that you are not ill anymore. You stop the medicine and the torture starts anew.
Many days it feels like a flu bug. You want to have a quiet day in bed and not talk, listen, or explain yourself. It is futile; I don’t know if people really can’t understand how I feel or are just intentionally horrible. Some people, after all, are just contrary by nature. Here are a few examples of the insensitive remarks I try to dismiss on a daily basis:
- “You really should get off of all that medicine and just exercise.”
- “If you would just stop eating sugar, nightshade foods, gluten, dairy, etc, your problems would be solved.”
- “You look exhausted, what happened to you?”
- “You must not have a very good doctor if you don’t feel better.”
- “Are you sure you aren’t just imagining some of this?”
- “I don’t understand how pain can make you tired.”
- “You must not be taking your medicine properly. If you were, you would be better.”
- “Why do you smile so much if you don’t feel well?”
- “My friend has the same illness, he never seems tired.”
- “You were fine yesterday, what’s your problem? Oh wait, I don’t even want to hear it.”
- “I’ve never heard that chronic pain affects your personality, why won’t you argue back?”
- “Oh, it doesn’t hurt, stop exaggerating, you are a huge drama queen.”
- “I have pain too, you know.”
- “Stop making that sad face.”
- “Wouldn’t we all like to stay in bed relaxing?”
- “You just refuse to take care of yourself.”
- If I felt like you do, I would be at the doctor every day, why aren’t you proactive?”
- “If you would just put some concealer under your eyes you would look a lot better.”
- “You used to bounce off the walls with energy, are you depressed?”
- “You’re not a fighter.”
- “You looked so happy just two hours ago, maybe you have low blood sugar.”
- “We are all tired, you have to make yourself do more things.”
- “My grandmother can do more than you.”
It feels like you have a secret. You do, because only you can know how debilitating a painful disease is. You cannot share the secret, you will only be misunderstood or labeled difficult. I do wonder why I have to constantly justify myself. It is such a waste of energy. I find more and more that I am happiest alone. My own thoughts are usually pleasant and clear, although I often drift in and out of a dream world where I am my old self.
It is a strange thing to find yourself worn down by another person’s energy. At one time, I gained energy from others liveliness. Now, I feel that I must ramp up my own strength just to buffer the effects from their unconscious hyperactivity. People hustle and
bustle around me. They push me to move faster with their grocery carts, or to rush out of a movie after sitting for two hours. They simply cannot understand why I move the way I do. I certainly don’t have the patience to explain. Why must I offer an explanation every time I have a setback. I don’t owe this to anyone. I want to be alone.