I found a wonderful blog called Indisposed and Undiagnosed. (actually she found me first…and I’m so very happy she did!) She wrote a wonderful article about What You Shouldn’t Say To Someone Who Is Chronically Ill. She has GREAT answers to her questions, and I think everyone should jump right over there and read her post! She’s a fantastic writer and you will love her answers and suggestions on how to really talk to someone who is chronically ill.
Here’s her suggestions on what not to say….I wanted to list my reasons for why….
10. “It’s just a bad day”
I do have worse days than others….but it’s never, “just a bad day”. I live with this every single day. Even on the days I can do more, I live in constant fear that it will be stripped away. I have to be aware that a severe vertigo attack could hit at any moment, I have to be prepared for the worse. I know a cluster headache too could take over and have me writhing in pain, praying for death over that pain. (they aren’t called suicide headaches for nothing!) I also live with a chronic persistent headache that never goes away. I’m very grateful for my better days and try to take full advantage of them…but I never have “just a bad day”.
My bad days are severe. I can’t focus on anything. The world spins violently. I throw up…a lot. I’m often in pain at a level of 9 or10 on a scale of 0-10. My bad days often end up in the ER. These are not the days I show many people.
9. “Have you tried…” // “You should try…”
Unless you have what I have….please try not to go here. When you do have what I have, we can compare notes, but normally I’ve tried all of that too. However, I don’t mind talking about it….unless you are trying to sell me something, or really think what you are telling me is going to “cure” me. There is no cure. If you think it might relieve some of my suffering, by all means talk to me…but don’t talk down to me.
I’ve tried so much, you have no idea. I’ve also had many reactions to things I’ve tried. And yet, I’m still searching and trying new things. I have to be careful, I have a lot going on, I am not going to compromise my health by trying something that my doctors don’t okay first.
8. “Come out with me and you’ll feel so much better”
This may be said with the best intentions, but I won’t feel so much better. I might end up feeling worse. But that isn’t to say that some days I might want to get out. Some days I really want to go out. However, you have to be understanding if I say I have to go home…NOW! And we would only be able to do the most gentle of outings. In a quiet place…unless you can be very understanding about my hearing.
The thing that I’d much rather hear is…..”Would it make you feel better to get out for a while with me?”
I normally can’t go out and do much. A visit would often be better, just sitting with me and telling me about your life would be great.
7. “At least you don’t have…”
I used to think like this, but I can’t compare how I am to others. I am very compassionate to everyone who has any kind of illness….they have their fight…and I have mine. I was told by my doctor when he diagnosed my vestibular illness… “I think this is one of the worst diseases that I know of that will not kill you. However, sometimes you will probably wish it would.” I’m not saying that for pity, it is just the way it is. No I don’t have certain diseases that can be much worse….and I am very grateful for that. If I sat around and only thought about…at least I don’t have ______. It would drive me crazy with guilt for feeling any suffering over my illness, and that would be impossible. Yet, my illness has made me much more empathetic toward others who are ill.
I must be gentle with myself, I know this is a hard road to live on, and carry on the best I can.
6. “You need to stop being so negative”
I try SO HARD not to be negative. I try to keep…not so much a positive outlook, but a realistic outlook….and I do not sit around feeling sorry for myself. I accept how my life is, and try to make the best of it. Sometimes that is damn hard, and yes I can be a bit negative, I get depressed, and overwhelmed. Wouldn’t anyone?
I don’t have many people to talk to, my dear hubby is the only person who really hears it all. When I see friends and they ask about things, they may hear more than they want. I don’t mean to sound negative, I’m really just telling things the way they are…just the facts. And unfortunately, when you asked, I thought you wanted to hear about it.
Imagine if you had a stomach bug and a bad headache for over a year….wouldn’t you feel a bit negative sometimes, and need to complain to someone every now and then? Well I’ve had a lot more than a stomach bug for and for longer than a year…understand a little?
5. “You got this because…”
I’ve heard this one a few times….I think I kind of ignore it. I mainly hear things like this from people who are trying to sell me something to “fix” me. Other people, I think….really? I’ve been to how many specialist who can’t figure it out…what makes you think you know? Now, I do hear it from people who have diseases, trying hard to figure out why they have it. I went through that. Why me? Then I realized…Why not me?
What really bothers me is when I have a vertigo attack, severe migraine or really bad day and people say….”What caused it?” Really? Do you think if I knew that I wouldn’t avoid it?
Or they try and figure out what caused it…..Okay, yes these things can have triggers, but most of the time, I have no idea. The only thing I have figured out that really bothers me is the weather and we sure can’t control that.
4. “So, what’s wrong again?” // “You’re still sick?”
This tells me you don’t think I really have a chronic illness that is not going away. It tells me you don’t believe me. It also tells me that you think I would play the “sick card” to get out of doing things with you.
Well, I am sick. Yes, I am still sick, chronic means it is not going away. I wish it would. I want it to be something that I could just take a pill for and it would get better. You probably get sick and it goes away in a little while, you have no idea what it is like to be sick all the time….and I am so very grateful that you never have to feel this way.
I hate being sick all the time. I never know what may happen in the future, everything changes, maybe this will change, but the prognosis is that it isn’t going away. I had to get used to it, I hope you can.
3. “You’re just exaggerating/making excuses/want attention”
I’ve never heard anyone say this to me….but I’ve been told it has been said behind my back. Sad huh?
Well…..It hasn’t worked has it? I’m alone most of the time. I’m lonely. I miss people. If you are reading this and you think I ever did this….I promise I haven’t. I really don’t want the kind of attention I get by being sick. I don’t want attention from doctors, or platitudes from people. I want to be able to have relationships where everyone feels I give as much as they do. I want to work and play and live……just like everyone else. But my life is different now. It’s much different. Some days, I’m okay with that. Other days, it tears me apart.
Just know…..everything I say about my how I feel and about my illnesses are true. I do not want special attention because of them. I only want a life.
2. “But, you don’t look sick”
What exactly does sick look like? No…really…think hard. Of all the people you have known, all the movies you have seen with sick people, all the times you have been sick….did they all look the same? Sick people look different. We don’t all have sicknesses that show on the outside, all the time.
I try not to let people see me at my worst. It scares me. When I have a vertigo attack I am terrified, I do not want anyone near me who isn’t my husband or medically trained to see that. I hide my pain as much as I can, if I can’t I need to be away from people. Understand, when I’m at my worst you won’t see me, so of course, I don’t look sick when you see me. You also have to understand, I may be gripping everything bit of will I have in my body to hold it together just so I can look good in front of you, so I can be as normal as possible for a moment, I don’t want to scare you away by looking as sick as I often feel. I’m afraid you will never come back if I look too sick…..yet if I don’t look sick then you think I’m not…..it’s very hard to know what to do.
I usually get…..”You look so good!” or “I’m so happy, You look Great!” or worst “You look like you feel so good” ….. Most of the time this doesn’t bother me. I don’t let a lot of people know how bad I feel. It bothers me when someone close to me, who knows I have been having a very hard time, sees a photo of me and says one of these things….I suddenly think….Really? You too? You think just because I look good for this posed shot that I feel good?
1. “It’s all in your head”
I’m lucky, no one has ever said this to me. Of course, I’m not sure if anyone has ever said it about me.
I love the answer that Indisposed and Undiagnosed gave….it is so true:
“The only thing I can say to the people who have used this line before is;
Yes, it is all in my head.
I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).”
Be sure to go to Indisposed and Undiagnosed and read her suggestions thing you CAN do for people with Chronic Illnesses.
** Please note** I do not blame any person for dropping out of my life. It is hard to stay in touch with a chronically ill person. Especially in the beginning when they are so hurt and it is so consuming. After that, it is even harder to come back in. Life changes, I understand that. For those who may want to communicate with me on any level, I welcome you. Being chronically ill and mostly housebound is a lonely life sometimes.