It happens again; after not speaking for months, I reach out to you to talk. After all, we are old friends. We’ve shared good times and bad, we’ve confided secrets, we’ve looked to each other for advice, we’ve aimed to make each other laugh.
Though I am hoping for a light-hearted conversation, it begins. You ask me how I am. You jump right into saying we need to hang out. You give me days and times that you’re free.
I panic thinking of how to respond. I could simply say, “I’m good! I would love to hang out soon!” I could leave it empty ended, but you would ask. “When is good for you?” Instead, I choose to be honest.
When you ask how I am, I reply, “I’m really not great.” When you say we should hang out, I say, “It’s been really hard for me lately. I haven’t been feeling well. I have a lot of doctor appointments, and I never know when I’m going to be free or feeling well. When I get home, I usually can’t really do anything. I’m in pain and exhausted.”
By speaking my truth, I’ve made myself transparent and vulnerable. I want for you to understand. Instead, you get annoyed. You’ve heard this the last few times you suggested hanging out, and you don’t even seem to believe me.
Maybe you reply with, “That sucks,” or “Poor you,” and then quickly try to end our conversation. Maybe you ask, “Have they found anything wrong yet? Are you sure you’re not just anxious? Could you be a hypochondriac?” Maybe, you don’t acknowledge anything I’ve said at all, instead saying again, “Well, maybe we can hang out next week then. I’m free on Tuesday.”
You think I’m seeking attention or trying to be negative. I’ve told you time and time again my diagnoses, yet you continue to ask if they’ve found anything wrong. You called me a hypochondriac, you literally said “Poor you.” I start to wonder why I called you, why I even want to be your friend. I wonder if something is wrong with me for putting myself in this situation.
The truth is, you’re sick of hearing about my chronic illness. Well, I’m sick of living with it. I am sick of not being able to go out with you. I am sick of not being able to have you over because my house is such a mess. I am sick of running to countless doctor appointments. I’m sick of being depressed. I’m sick of being in pain. I’m sick of being so damn exhausted. I’m sick of being sick.
We hang up the phone, or stop texting. It immediately sets in; I feel guilty of being such a Debbie Downer. I think to myself, of course you would act this way. I never have anything good to say or anything positive to bring to the table. I don’t look sick; maybe you genuinely just don’t understand.
Then, I think, screw that. You’re supposed to be my friend, through thick and thin. If you didn’t understand, and you cared, you would ask. I listen to you about your crappy boss, your relationship troubles, your financial struggles. I don’t judge you and I don’t get annoyed. I understand you’re not trying to be negative, I let you vent, and I hear you. Things aren’t always happy-go-lucky, and without dark you can’t have light.
Why should I always have to feel so bad, wrong and mad, after we talk? After all it’s been at least five years now since I’ve been chronically ill. You don’t reach out to me. You don’t ask how I’m feeling. You haven’t seen me in pain. You haven’t seen me when I’m scared of what’s going to happen next and what the future holds.
The truth of the matter is, you don’t owe me anything. You don’t have to be there for me. It is just a hard pill to swallow, that you, my friend, does not support me. If I had a condition you were more familiar with, maybe you would visit me while I sat through treatments. You would ask how I was feeling. You would cherish our conversations. But you can’t see my illness.
I am in incredible pain as I try to wash my hair. I have to sit down in the shower and wonder how I am going to get back up. Sometimes someone washes it for me. Sometimes I cry. I am not withering away; I’ve gained weight. You think “well, she’s able to eat, she’s healthy. She’s not exercising, she’s just lazy.”
I’m not able to be active due to the pain I’m in. I can’t bend over or lay flat because the CSF fluid in my head and spine causes so much pressure I can’t function and can become immobile. All I have to do is stand up for my heart rate to spike and to start having extreme heart palpitations. If I push myself to exercise for an hour one day, I’m out of commission the entire next day. I can’t sit on anything hard because my entire pelvis and both of my legs go numb. Not the kind of numb where you can’t feel anything, the kind of numb that feels like pins and needles stabbing all over. If I spend 20 minutes doing dishes, my hands become swollen and painful, stuck in a “C” shape. My right eye is permanently blurry. Lights cause me to have extreme eye pain and migraines.
These are just a few of the things I experience daily. But you don’t see these, and you never asked. If you want to call me a hypochondriac, fine. If you want to belittle me and say, “poor you,” fine. However, do not expect for me to call you a friend. I do not deserve “friends” like that.
I have a chronic invisible illness. I’m sorry being sick has made you sick of me, but I won’t let it be my problem anymore. I do not need you to validate me, but instead I choose to know I am valid. I am worth kindness and empathy. I am allowed to speak my truth. I am deserving of being surrounded by people who hear me. I will continue to advocate for myself and fight this battle, because I am worth it.