I hear my cellphone ring on a Friday evening, I look down and I’m hesitant to answer because it’s you. I answer because I care about you and I know you care about me too.
“Hey, do you want to meet up tonight for dinner, maybe a drink or something?”, you say.
Silence comes over the line. For you it’s just a pause, but for me it’s my mind racing.
Allow me to take you inside my thoughts for those few seconds…
This is me so happy you’ve thought about me and are actually inviting me out. I am surprised you haven’t given up on me like the rest of the world. But I’m panicked. Because it’s complicated. I won’t dare to tell you this but…
- I cannot eat gluten. I avoid eating out at all costs because I don’t want to end up sick for days.
- I don’t drink because it’s not recommended with the medication I am on.
- I don’t want to be anywhere loud because its gives me a migraine.
- Honestly, I am really tired and don’t want to put the effort into moving from my couch.
- My pain is acting up and I know if I go it will just get worse.
- We always talk about my illness and I am just not up for it.
Then again, I cannot make my illness win. I cannot let it define my life.
I reply, “Okay, sure.” And before I put my phone back down regret has already set in. I go and that message is written all over my face.
You’re tired. You simply don’t want to hear it anymore. You’ve tried to help me. You said things with good intentions, but it seems that it only makes things worse. You must be asking yourself, why? How does this person not see that I am trying to help?
That is your side, or at least the other side as I try to see. I’m difficult, in some ways by choice and others not. I come with baggage that seems only to get heavier as time goes on. I want things to get better contrary to your belief. I know most want well for me and I acknowledge that. I greatly appreciate it. Nevertheless, I know there are many sides to a story. But I think I’m best at explaining mine.
I`d like to share with you the most common phrases that have been said to me over the years. The ‘good intentions’ that can hurt for someone in my shoes.
- “I know someone who has Lupus(illness). And they are fine. She even has three kids, goes into the sun and is living such a happy life! Why is yours so bad?”, you ask with disbelief in your face.
- I simply smile at you. Then, I proceed by telling you the following: “Every single lupus patient is different. No two people are the same. I am happy for your friend, I truly am.” But when you say this to me it makes me feel as if you don’t believe me or that I haven’t validated my condition to you. It makes me feel broken inside. What hurts the most is that I have known many people with Lupus who have lost their lives. I know more people struggling than prospering. All in all, I truly don’t believe anyone should compare their chronic illness with another. All it does is set you up for emotional pain. Though you have a ‘good intention’, I am left with despair. I wonder why I am not like your other friend.
- “Maybe if you just exercised more, ate this certain diet, tried this miracle supplement, you’d feel better”.
- I don’t respond to this and just let you keep talking.
Okay, I see that you are trying to help. But these things make me extremely frustrated. I have tried almost everything. Do you honestly think I wanted to be on Chemotherapy? Nothing else has helped. If it was that easy, I would have done it already. When you say things like this it makes me feel like you think I am choosing to live this way and that is simply not the truth. I feel as if you think I am not trying to better my situation. The truth is that I struggle everyday just to get out of bed in the morning. I try more than you could ever imagine.
- Positive thinking- “You should just stop thinking about it, and it will go away”. “You just need to be happy and you will feel better, all of it will disappear”.
- I have no response to you.
This one, the worst of them all. I will actually want to leave where ever I am when someone says this to me. I feel like someone might actually see smoke blowing out of my ears.
Let’s be clear! I wasn’t sitting home one day ‘negatively’ thinking about being sick and then became sick. I have tried to think it away and I told myself that everything was fine. I even ignored it for years, it did not help! It made things worse. It’s not good advice when someone has a disease that literally destroys one’s body! You think I am anxious and depressed, but that all came after. Years after being sick and not having answers. Years after being so young and in so much pain. I am literally sick and tired of being sick and tired. If you were in my shoes, you wouldn’t be jumping up and down for joy either. It’s hard to be positive all the time especially when you have so many ailments and you feel like there are days that your life has been stolen from you.
I did not choose this. I did not want this. It happened.
I would like more than anything that your ‘good intentions’ would be the fix to my problems. But they won’t. All these statements just make me feel like your challenging me, my life, and my unforgiving illness. I feel like I am being judged. I can see you are trying to help. And I am trying to get better at responding in a productive, healthy way. But these conversations end up leaving me sad or depressed for days to come. I begin questioning myself and how my life is. At this very moment in my life, words have become more like knives. So please, be careful in how you throw them. I am trying to see your side. Can you please try to see mine?