When you have someone in your life who struggles with chronic illnesses or any kind of invisible illness it can be a challenge to know what to do or say. Here are 9 dos and donts as a guide from my past experiences.
Do: Be patient
We may look healthy on the outside, but that doesn’t mean we are on the inside. There are days that we can maybe do a lot, but the next do nothing. It’s important to be patient because it isn’t anyone’s fault. I know for me I get frustrated when there is something I can’t do so I dont need the people around me to also get frustrated.
Don’t: tell us to just move on
If we could get up and live our lives, don’t you think we would? I have had quite a few people in my life whether it be doctors, or just people I know tell me I am fine and just move on. I always think to myself if only you had to deal with I do on a day to day basis. If you want to be there for the people DON’T say this to them.
Do: Advocate for the person in need
Sometimes we can’t speak for ourselves and you can step in and this is where you can show your support and love. Maybe it’s a doctor? Maybe it’s other people you know? Or even on a bigger level such as government rights. We can always use more voices speaking up for us.
Don’t: yell at them for not being able to do something
There are plenty of days that my boyfriend and I have plans and out of nowhere I am in so much pain or so sick that I can do much. Instead of getting mad at me he is so supportive and will just hangout at home with me. Be that person for the people in your life.
Do: try to empathize with what they are going through
Maybe you have no idea what we go through, but there is always a way for you to still be there emotionally for your loved ones. Empathy can go a long way.
Don’t: Undermine their feelings or pain
The worst thing you can to say someone is “it could be worse.” Pain is pain and it should never be compared or used as a weapon to make someone feel guilty. I think for me this is a trigger because I know there is always someone worse than me and I am worse than someone else. I don’t want to be reminded especially if I am having a really bad flare up. My pain is my pain just like someone else’s pain is their pain.
Do: ask if they need anything
It’s always better to ask than assume. It never hurts to come right out and ask if they need something specifically. Sometimes I don’t like to ask for things, but if someone asks me I tend to be a little more comfortable saying okay.
Don’t: Give up
No matter how rough things get please don’t give up on us. It might feel hopeless sometimes, but knowing I have someone sticking by me and not giving up it makes me want to fight even more.
Do: Learn as much as you can about their illness
If the illness or syndrome is something you don’t know much about then take some time to ask questions or do your own research. That will truly show much you care.
I hope these will help you to know what to say and what not to say. Even if there is one thing you do, or don’t do that to me is already a step in the right direction.