Things That Are More Helpful for My Illness Than Saying 'Feel Better'
Dear friend, partner and family members,
I get it. It’s hard to understand what someone with a chronic illness or chronic pain goes through on a daily basis without really experiencing yourself, or being it in with them fully. You want to do everything that you can to “fix” the problem, but there isn’t anything to fix when you have a chronic disease that has no cure.
What you may not know is that this disease is not only my life and my journey, but it is also my job. I put hours and hours into researching my disease, talking to women with similar symptoms and diagnosis, finding alternative therapies, treatments, quasi-cures and looking into why this is even happening in the first place. I go to doctors appointments and know more information then the doctors or specialists themselves about my condition.
As nice as it is to hear, “feel better,” “you’re too young to be this sick,’ “you can get through this,” “we will get through this,” “you are a fighter and so strong,” or “we will find a cure one day,” it gets exhausting hearing those things because they are not helpful. They are making you feel better about my situation rather than me.
I found myself leaving conversations with those that I love the most feeling unheard or disconnected. I knew there was no way for them to understand what I was really saying because they can’t physically and viscerally experience it. I also left those conversations feeling low, down and worse off than when I started them.
I began to shut down and would not open up even to the ones closest to me and just went with the usual, “I’m fine. Everything is fine,” approach. This approach isn’t helpful either because then as I shut down, I go to a dark, lonely and isolating.
It is very easy to slide back into that space and think that you are alone in this and no one could possibly understand. After hearing these responses and a lot of similar ones, I began thinking about why these are the responses that our culture goes to immediately…What can I tell people that would actually help and serve me?
I spent a few months of feeling shut down and being aware that I was sliding back in to the dark space. I began to think about if I had a magic wand, what would I want to create? What would I want these people to say to me? And I realized something so powerful and so amazing.
All I really need from those that I love is deep listening. I really just want my close friends, family members, and even my partner to sit down with no other distractions and ask how I am doing. I really just need them to listen to my response and give me the space to share how I am feeling.
I think that people get really caught up in what they are going to say next, how they are going to respond and if it is going to be the right and supportive thing to say. And it’s interesting, since having this awareness, I have played around with it a little bit and observed people when they ask me how I am doing. I pay attention whether they are really listening for my response or just asking to get it over and done with so we can move on to another part of our conversation.
I realized people are uncomfortable with my response. They don’t know how to just be in the shit with you. They don’t know how to handle or respond to the fact that I am struggling, and that it’s hard and has been frustrating for me. It’s OK that there isn’t a cure, and it’s okay that you don’t have those magic words that are going to completely fix all the problems in my life.
I don’t need to have a “fix it” conversation, I am OK with where I am at. I am relatively at ease and accepting of what this journey is for me. I have a lot of tools in my toolbox, and know what methods will help and what is working for me currently.
Don’t get me wrong, I will never stop advocating or researching for a cure, but that isn’t what I am asking for from my loved ones.
I am asking for the space and a listening ear to honestly feel how I feel and speak what I need to speak. And a response of, “That really sucks, I can’t imagine how hard that must be,” is honestly the only response that I need to hear. You don’t have to make it better for me.
Another thing that I really can’t stand to hear is, “If you need anything let me know.” As someone who has a hard time asking for help, even before being diagnosed with a chronic illness, this feels like the most insincere form of support that I have received.
Chances are I will pretty much do anything and everything to not reach out and ask for help verbally. It can already feel like a burden to have to ask for things when you are experiencing a pain flare or severe symptoms, and I feel bad and guilty enough for having to rely on my husband as much as I do.
With that said, we are both in it together. If you want to really help, think of things on your own that may be a nice and helpful gesture for a friend, don’t put the ball in their court.
If you really wanted to do something hands-on, do some research in your spare time on my condition. Ask me questions about how it feels or what new research I have come across. Ask if it would be helpful to go to a doctor’s appointment with me, or how my last one was.
Do things that would be helpful, such as bringing a meal when you know your friend is having a pain flare and is too tired to cook. Fold a basket of laundry that you see sitting there while you’re visiting. Ask if the dogs need to be walked or taken out before you leave, or if you could start dinner for the kids before you leave.
These are helpful things that make it feel like you care. For me personally, it makes me feel cared about. It makes me feel heard and connected in a way that can be a challenge when experiencing chronic pain or chronic illness.
I am still practicing asking for help and it can be a tough pill for me to swallow. Not only do I want to do it for myself and find it frustrating that I can’t, but asking for help can be hard in general. Although I know in my mind and heart it is a sign of strength, at times for me it can feel like a sign of weakness.
These are all helpful things that go so much further than “feel better,” “you’re so strong,” “let me know if I can do anything to help,” and “we’ve got this.”
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