What Are Topics That are Difficult For You To Talk About?

[Valerie]

Hello!
Brittany, after your introduction to this topic, I thought about the answer and realized that I find it difficult to discuss ALMOST ANY topics. This is especially difficult in real life. In the message on the Internet I can still think about the answer or send a smile, but in life it will not work. Sometimes I feel like I’m working as a secret service agent, only the secret data is my life.
I agree about the things you wrote about. It is difficult to discuss many things with doctors, especially if most doctors are like what I met. Also, I do not like to discuss anyone’s personal life, because the conversation is invariably transferred to my personal life. It’s even hard for me to discuss “go to a restaurant/movie/walk” issues with friends or familiar people because I have so many things that will prevent this. For example, I can’t go for a walk without stopping every three minutes. But I don’t want to explain the reasons for stops to familiar people, especially the new one. I prefer to say “Thank you, I’m not involved, I’m busy” than to explain why the flickering lights in chosen cafe give me a headache, or why I won’t go congratulate a colleague with a newborn. This is worse than explaining my story to doctors, because doctors at least approximately can understand the seriousness of my words.
In general, it turns out some irony. I hate to discuss stupid or trivial themes (like weather, traffic jams, political news), but that’s all I can talk to people about, because these themes don’t make me have difficulty communicating. With this I can stay positive and smile. Most other things make me tense, shy away from talking, nervous, or giggling stupidly. Without difficulty I could discuss movies, books, music, or something like that, but on general topics of these areas of interlocutors is in reality quite small.

[Brittany Foster]

Valerie,
I can definitely relate to what you’re saying right now. Sometimes it feels difficult to bring up ANY convo in front of well bodied friends. Funny enough, when I try to bring up my health sometimes I don’t feel understood and feel the need to lie to make friends feel more comfortable. But when a friend brings it up they are all ears. But the question remains “how much do I reveal?” have to stop myself from responding in a sarcastic way and realize that they need to be educated on what we are going through. You should practice taking those moments and creating an oppurtunity got them to learn more about you.

[Valerie]

I agree that it is better to keep yourself from sarcasm and tell the truth. But it is difficult when you do not meet understanding. It seems to me that many people feel that I can tell them something heavy or difficult and try to “protect” themselves from it in advance. They try to avoid talking without being aware of their actions. Many people prefer not to hear or know that there are problems such as poverty, physical illness, mental illness, and so on. But we do not talk to all the people in the world, but with friends and family. When you meet their subconscious avoidance of “problem” topics, you stop wanting to tell them something. My native aunt went with me to the neurologist and then said that I invented migraine, that it does not exist in nature. Do I want to talk further about something with such a person?
Even if family and friends understand you, absolute honesty is still impossible. They will have to be constantly reminded of what and why you can’t do something with them, and they (as you said) will feel uncomfortable. Therefore, in order not to strain them or you have to talk about stupid things.
About doctors… Well, you can talk to each of them about their specializations. But the questions from other medical fields or even from their own lives they are confusing and they also respond indirect. Like I asked the gynecologist, “could there be irregular menstrual cycle because of revatio”, to which she shrugged and said, “it could be”. They do not answer correctly to questions that are so difficult to ask.

[Brittany Foster]

Valerie
You’re so right. There seems to be more people that want to turn a blind eye to difficult topics, especially when it comes to sensitive situations with someone they care about. It’s hard because I understand why those who I am so close with don’t want to see the bad in my situation but it can be frustrating and feel isolating when trying to explain it over and over again. I guess it’s just a good thing that there ARE people out there who understand on a personal level and that’s why forums like this can be so important to those with rare diseases.

[Gayle Ward]

I find talking with family and friend about how I’m feeling is difficult. My husband worries if I say I am having a bad day so I find when asked how I am I usually say “I’m fine”.

[Brittany Foster]

Hey Gayle,
I know talking about things with our significant others can be complicated when their emotions and feelings are so involved too. Obviously they care so much about us so when they hear that we aren’t doing well they probably feel helpless because so much of this is beyond their control and their power to help.

[Kaye Norlin]

It’s amazing that I have no problem telling strangers things about me but my family gets very nervous if I say that I don’t feel well, so….

[Brittany Foster]

I totally understand this Kaye
It’s hard to talk about certain things with people who have such a loving and emotional connection to us. When others feelings get in the way and are expressed to us sometimes it can make us feel more nervous about our health too especially if others are showing a lot of concern

[Janet Barry]

Gayle,
I agree. I’m the same way. I usually say ” hanging in “.
Usually after I’ve seen one of my docs I share only the positive reports. I’m not sure if it’s because they only “glaze over” with other reports.
Janet

[Brittany Foster]

I always find it difficult to strike that balance of “I’m fine” to “it’s all terrible” especially because I don’t want to be over dramatic in front of the care team or make it seem like my issues need immediate attention either because I HATE having to go to hospitals.

But sometimes the shorter answer of “hanging in there” saves me a lot of trouble even if I’m hanging on by a thread.

[Kathleen Sheffer]

“Hanging in there” is totally my family’s go-to!

[Brittany Foster]

LOL!! @kathleen-sheffer mine is….

My therapist/any medical professional or person ever: “how are you?”
Me: “Oh you know… LIVING THE DREAM!” hahahahahahaha (with tubes coming out of places they shouldn’t belong hahahaha)

[jen-cueva]

Great topic…

Wow, I think talking about my symptoms in huge details is difficult, even after so many years dealing this this ! I know at times , I don’t speak up when I should. I think the most difficult is probably sex, anxiety and pain to my doctors . I think some days I give hnts but not as ofteb and as detailed as I really needed to be .

I also have a tough time with my family as they dint always get it ! My go to answer seems to be , “ I’m alright “, that’s not fine, not bad m so it’s my most often answer !

I also have the most difficult telling my Hubby , my Daughter, Son in Love, parents, and few closest friends when I’m having a rough day. Often, my hubby knows as he seems me the most, my Moma and Daughter have both learned by my voice and often know I won’t answer if I’m feeling really bad! It breaks my heart when they have to watch me suffer and / or they have to do things for me . ( well I’m sure this most recent hospital stay sparked this , lol )

[Brittany Foster]

I really relate to everything that you’re saying Jen and get that it can spark so much more anxiety in those that we love especially after a hospital stay when they see us being so vulnerable. It’s hard to see someone we love in pain and suffering and not being in control or being able to do anything about that is just terrible. I think that is what can upset family members the most is the fact that this is completely out of their hands and feeling helpless is never a good feeling. I also find it hard to talk with my doctors honesty about pain because when I do I usually break down and start crying and then they offer me some type of medication like anti-depressants that I don’t need LOL! Like NO I’m explaining physical pain to you and crying because it’s emotional, not because I’m depressed. Sometimes I feel like they can be quick with the Rx pad ! Talking about sex with some doctors is so awkward especially if it’s a male doctor. I have no problem talking about it with women doctors. But having a male infertility and reproductive specialist asking me about sex positions and my love life is just weird to me LOL! I know they’ve probably heard it all, but still!

[jen-cueva]

Brittany , you are right on ! They are always fast writing a new RX and yes, if I get emotional and start crying , I’ve have then tell me I just be depressed! My PCP actually had that on a chart when I saw a NP, I saw that and told my PCP, “take that off, I’m not depressed, I’m just living my life ! “ ….he did !

I agree talking about sex is much easier with a female doctor , for me as well !

[Brittany Foster]

Jen,
It honestly is appalling to me how quickly females are stereotyped as the neurotic ones and the “depressed” ones just from shedding some tears and showing emotions! God forbid we were as stoic as they would like us to be, we would go nuts from all that is kept inside! Better to let those emotions out than keep them in. Also a doctor’s office is a HIGH STRESS situation. There is a difference between situational anxiety and general anxiety and I think all doctors deserve a training on mental health. Some of my doctors are totally amazing with it all though and are there to listen, give me tissues, rub my back, what ever is needed in the moment and those great ones deserve recognition too!