People with a chronic illness live with their illness like Olympic athletes live and breathe their events day in and day out. Except for one major detail, we didn’t choose to be chronically ill and we don’t love it. We do, however, know it inside and out, think about it, deal with it,and manage it, every single minute of every day of our lives. We know our bodies, we know our illness, we have tried all kinds of treatments from the expected to treatments you have never heard of and neither had we until we were faced with trying to survive this illness.
So, when I mention that I am struggling, with pain, fatigue, I’m having seizures, or can’t seem to control my hands this week and your response to my struggles is to mention that maybe yoga, or lyrica, or a cortisone shot, or vitamins, or a diet, or whatever it is you recently heard or read could help with whatever random symptom and my response to you is less than enthusiastic. Let’s be honest, I want to tear your head off…and I’m not alone. This is the general feeling about advice when the chronically ill are struggling through a particularly rough time. Mind you, this isn’t because we are total jerks and don’t understand the fact that you are trying, in your own way, to help. We know that; it’s the reason your head is still attached to your shoulders. The problem is that it’s not only not what we need, but, for us, it also comes with a lot of negative connotations.
Here are 5 ways I can take your well-intentioned comment negatively.
Me, “My pain has been really high this week. I’m having a hard time dealing.”
You, “Have you tried yoga? I have a friend that does yoga every day and it really helps her pain level.”
- I hear you suggesting that I’m not trying hard enough to manage my condition. That I could be doing better.
- I hear you suggesting that I haven’t done enough research to already know about yoga, which I assure you, anything you just read about I learned about and tried twenty miles back.
- I hear you suggesting that I’m not intelligent enough to have figured out something so very basic.
- I hear you suggesting that I’m not doing everything in my power to get better when that is all I’m doing.
- I hear loud and clear that you don’t understand my situation and now I not only feel in pain and miserable, but I feel lonely because we have experienced a disconnect.
I’m fully aware that most of those are absolutely my baggage and you really weren’t saying or suggesting any of it. I know you meant well and I can logic it out on all of those except the last one. We have, in fact, experienced a disconnect. I wasn’t looking for advice, if I was I would ask for it. I was looking for kindness and support. Unfortunately, our society doesn’t teach us how to deal with long-term illness and suffering. We don’t know how to sit with someone else’s pain and just hold space for them. We want to move, to fix it, to make it better, to do something, that is what we have been taught. It’s wrong. With chronic illness, we need you to sit with our pain and accept it thereby accepting us. I understand that people love me and want me to feel better, but really, it’s not in the cards. So asking me if I’m better makes me feel like I’m disappointing you. There is nothing I can ever do to make many of my illnesses better. They will, instead, deteriorate with age. I have come to accept this, and all I want is my loved ones to accept me as I am.
So instead of trying to “help” or “fix it,” here are some very welcomed responses when we are struggling.
- I’m sorry you’re… “hurting,” “having a tough time,” “going through this.”
- I love you and I’m here for you.
- Is there anything I can do for you? I’m going to the grocery store, do you need anything?
- I’m sending lots of hugs. Do you want to talk?
- You’re so brave, I don’t know how you do it.
These statements are of love and support, it can be hard to just sit with someone who is suffering, but there really isn’t anything to do but love them. Honestly, that’s all I ever want when I’m really suffering. To know I’m loved and supported and if I suddenly need a ride to the ER I’ve got one. It’s not a tall list of needs, considering I may be staring down grande mal seizures or debilitating nerve pain or a loss of hand coordination or vertebrae that are crushing major nerves and my spinal cord or a heart that doesn’t beat well enough to get blood to my brain, etc. My loved ones can’t fix any of that, not even my doctors can fix a lot of it, but they can sit with me and support and love me as I endure it.