How to tell the truth about an illness without making people sad?

[Yeshuasdaughter]

I don't like talking about these things at all. I don't ever want to make someone sad.

I just spent the past 24 hours in bed, mostly asleep. Tossing and turning. Making little ouchie sounds. Trying to hold it in.

I spend a lot of days like this, during the past few months. Not always, as I do often like to get out of the house spontaneously, and try to make happy memories, especially with my daughter. But it does happen frequently, where I need to spend a few days in bed.

I don't want to make my loved ones sad, but when I talk to them they ask what I've been up to or what I am doing. It is a sign of caring, and curiosity when they ask. What do I say when all week long I was tossing and turning in bed?

On the same note though, if someone I loved was ill, I would want to know all about it. I would, in my empathy, want to hear the whole story, and do anything I could to help ease their burdens in life. I can relate to a lot of hardship. But in that, I don't want to make anyone suffer needlessly.

I am a survivor of a very serious illness, and this new one is not the same. I remember the pain in everyone's eyes. The concern that vibrated in their voices. I can't do that to anyone again.

I know that they would want to know everything. But I just can't bring myself to give someone that terrified look that they got when they found out I had my previous illness.

This illness is nowhere as serious. But it's still hard to do many things. How do I tell the truth about my recent history, but in a way that doesn't scare my loved ones?

 

[Rodafina]

I can't do that to anyone again

But I just can't bring myself to give someone that terrified look that they got when they found out I had my previous illness.

How do I tell the truth about my recent history, but in a way that doesn't scare my loved ones?

I wonder if this is more a case of accepting a sad truth and your suffering more than finding the exact right words. You aren't really "doing" this to anyone. You are not actually causing the terrified look that they get - the truth of your illness is doing that, and it is reasonable for them to feel scared because illness is scary. I don't think we can try too hard to control others' feelings. If you sugarcoat your experience and soften the truth for them, then you are just absorbing that back onto yourself (pretending things are better than they are can take such a toll).

I do think that maintaining a balanced attitude through illness can benefit our health and so maybe sharing the difficult things as well as some of the positive and hopeful things can help you and your loved ones deal with the hardship of illness. Maybe you could sometimes focus on your accomplishments against the illness - like if you've found something that helps, had a good day, or pushed yourself to do something fun and had a great time. I think sharing gratitude for others and letting them know that you want to share happy moments with them when you can is important.

If you were my sister or my mother, I would want to know what you are going through. I do understand that the terrified looks and the feeling of worrying others is very difficult. But from the other side, I'd want to know the truth of your experience and would want to be there to witness your struggle and help when I could. Perhaps, you can try to think about what you would want to hear. If one of your loved ones was struggling as you are now, what would you want to hear from them?

 

[Mary Terry]

@Yeshuasdaughter - I'm so sorry. Your strength and kindness are amazing. I think you need to be open with your loved ones about what is going on. They would want to know.

 

[WhitewaterWoman]

Take a deep breath and feel your stomach relax. Share your diagnosis and symptoms with those people close to you, as appropriate to the closeness of the relationship.

When I am in a lot of pain from my chronic illness and people ask how I am doing, I can say something like, "it's been a rough few days," for example. Or: I'm in the middle of a flare and everything hurts. Or, "I'm feeling down because I can't figure out how I am going to (do whatever) without some help." Or: "right now, it's not so bad."

I personally don't like to dwell on these things especially if there is someone nearby who cares. So while I may admit to how bad something is, and give it a few minutes, I'll then say, as I recently did to my sister-in-law, "but tell me what's going on in your life."

Just FYI, there are times when I spend most of the day in bed, sometimes several in a row due to pain and exhaustion. I don't want to live that way, but those are the cards I was dealt and I have to play them as best I can.

 

[Judge]

@Yeshuasdaughter - I'm so sorry. Your strength and kindness are amazing. I think you need to be open with your loved ones about what is going on. They would want to know.

Totally agree.

Truth allows for credible hope and optimism. Subterfuge even well intended can backfire.

 

[Aspychata]

Like WhitewaterWoman, l am learning to chose my words carefully. I now experience panic attacks, this is crippling. But my partner doesn't blame me. I am just truthful. We have good days, we have bad days.

 

[Shamar]

I don't like talking about these things at all. I don't ever want to make someone sad.

I just spent the past 24 hours in bed, mostly asleep. Tossing and turning. Making little ouchie sounds. Trying to hold it in.

I spend a lot of days like this, during the past few months. Not always, as I do often like to get out of the house spontaneously, and try to make happy memories, especially with my daughter. But it does happen frequently, where I need to spend a few days in bed.

I don't want to make my loved ones sad, but when I talk to them they ask what I've been up to or what I am doing. It is a sign of caring, and curiosity when they ask. What do I say when all week long I was tossing and turning in bed?

On the same note though, if someone I loved was ill, I would want to know all about it. I would, in my empathy, want to hear the whole story, and do anything I could to help ease their burdens in life. I can relate to a lot of hardship. But in that, I don't want to make anyone suffer needlessly.

I am a survivor of a very serious illness, and this new one is not the same. I remember the pain in everyone's eyes. The concern that vibrated in their voices. I can't do that to anyone again.

I know that they would want to know everything. But I just can't bring myself to give someone that terrified look that they got when they found out I had my previous illness.

This illness is nowhere as serious. But it's still hard to do many things. How do I tell the truth about my recent history, but in a way that doesn't scare my loved ones?

You have been an icon of strength and love for as long as you have been here. We need to return some of that to you. Stay strong, endure, don't ever give up.

 

[marc_101]

It's not your fault. Tell them what they should know. It's not you making them sad. If the same would be happening to loved ones, you would like to know, right? Would you feel that it's something they are doing to you? Probably not.

 

[Yeshuasdaughter]

You guys are so sweet.

 

[MC1Rcat]

I can understand your situation from both sides. I live with a chronic condition that keeps me home in bed a lot. I am also the daughter of someone with stage 4 metastatic cancer.

I understand what you are saying about how you feel like people are saddened by talking to you about what is going on with your life and your health. When you have a chronic disease it is hard to separate the two. I feel the same way. Certain people have stopped talking to me as often. I have also noticed that people cut conversations short... or when I see them, they literally back away from me if I tell them what is really going on with me.... even relatives. It is difficult to know when it is okay, or not, to tell people anything about what I deal with on a daily basis. People always ask how you are doing as a regular part of small talk, and I never know if I should go there or not. It can make you feel more isolated and depressed because it seems like no one wants to hear about what is really going on. A lot of times my response just depends on if I am in the mood to talk or not. Sometimes I say that things are still difficult, but I am dealing with it as best as possible...and then talk about something else. If people ask me more about my health or my daily life, then I will answer questions. I still feel like I cannot tell most people very much about myself and my life, if I cannot tell them about my health problems......because my health problems dictate what I can/ cannot do and eat, as well as a lot of the things that I have to do on a daily basis. Especially because lately, I am trying to apply for disability and public assistance programs, as well as going to a lot of doctor appointments.

From the perspective of a family member of someone with a chronic disease, I can say that I want to know what is going on with my mom. I don't know if I have a different perspective because I live with a chronic disease and treat my mom how I would want someone to treat me. I know that my time with her is limited and I want to have a good relationship with her for as long as I still have her. A year ago, she was withholding information about her illness from my brother and I, in order to "spare us pain". She became more distant and would not always answer the phone or call/ txt back, which was very unusual for her. It was very upsetting. I know that nobody really knows how long they will have someone in their lives, cancer or not.....and I decided that I did not want to lose my relationship with my mom before I actually lost her to death. I had a conversation with her about it and told her that it was going to be hard to lose her when she passes away, but it will be easier for me if I have a good relationship with her when it happens. I told her that I know it is not easy for her to go through cancer treatments and having cancer in general, and that I don't want her to have to do it alone. I want to share it with her. It is really not easy and it is very upsetting, often. But, I think that it is worth it.

So, regardless of whether people are affected by a loved one's illness, you may want to still share what's going on with them. Even though it is hard, they may still want to do it. I think it is a lesson in life, that everything is not always unicorns and rainbows, especially as we get older. It is also a lesson in love, and an opportunity to share something deeper with the people/ person you love. I can say that, my mom's cancer has brought her closer to me and to the other family members who have been able to be there for her to that degree. I have also seen that not everyone is able to withstand the intensity of the situation, and they have not been able to talk to my mom a lot. My brother is one of those people. So, I guess you just have to try to gauge who can handle it and who cannot.... and appreciate the ones who are really there for you.

 

[Cryptid]

Since I believe that relatives ask about my personal life only to feed their gossip mills, I usually answer with something like:

"What have I been doing? Oh, the usual . . . some days are better than others, some are worse. How about you?"

 

[Yeshuasdaughter]

I just don't want to hurt anyone. And I want to bring joy to people. It's hard. The people who do know, it's just two actually, I feel terrified of what they are thinking or feeling. Am I stressing them out? Am I making them sad? Do they think I'm whining? I love those closest to me, so very much. I don't want to see that sad look in anyone's eyes ever again, that I saw in everyone when they found out I had cancer. It was me bringing pain into their lives

I have very few people in my life. And the ones who want to stick around, I don't want to push them away, or depress them. I don't want them up late at night, like I am right now, worrying.

But you guys are right. Transparency and honesty are best. I just can't tell, as an autistic woman, how to say things, or how to tell what people are feeling about my truth. But one emotion I can recognize in a person is sorrow. I don't want to give that to anyone.

 

[WhitewaterWoman]

I just don't want to hurt anyone. And I want to bring joy to people. It's hard. The people who do know, it's just two actually, I feel terrified of what they are thinking or feeling. Am I stressing them out? Am I making them sad? Do they think I'm whining? I love those closest to me, so very much. I don't want to see that sad look in anyone's eyes ever again, that I saw in everyone when they found out I had cancer. It was me bringing pain into their lives

I have very few people in my life. And the ones who want to stick around, I don't want to push them away, or depress them. I don't want them up late at night, like I am right now, worrying.

But you guys are right. Transparency and honesty are best. I just can't tell, as an autistic woman, how to say things, or how to tell what people are feeling about my truth. But one emotion I can recognize in a person is sorrow. I don't want to give that to anyone.

Pain and sorrow are part of life. Of course we don't want to inflict pain on others. But you are not inflicting pain. When you are dealing with end of life issues, pain is part of it. It is not your choice.

To let yourself experience the pain alone...doesn't seem right to me. From one point of view, it could be seen as an insult to your loved ones to exclude them from this important part of your life.

I was once horrified to learn from a friend that she went through an abortion without telling me or letting me help her through it.

 

[paloftoon]

People accepting truth and supporting you for things not under your control is a sign of true friendship.