As it gets warmer, people tend to make plans for outings, cookouts, vacations and other social events. Sometimes we get to be a part of it and sometimes we have to stay home and self-care, which is 100% okay. However, I have found myself turning down invitations because I know the “health questions” and the “how are you doing” scenarios are an inevitable outcome. There are times where I do want to take the time and spread awareness and share what is going on, but I usually have to feel out if the person really wants to know, or is just being polite. Then there are other times where I do not want to talk about it at all. I want to feel normal and not sick. Even if I am not feeling well that day. I still want to be treated just like anyone else instead of a quarterly update. I thought it would be good to share in our Weigh in Wednesday Post about how to divert the discussion away from our health in social settings. We received some great answers and I hope you will find them helpful in your own journey.
Kim- Yeah, I've got zero tact about this. I'm usually in the "can we stop talking about this now?" mode. Note that my voice will be tinged with either great annoyance or tears. And....I have spent years teaching communication skills.
Amanda- I usually say "I am managing my condition pretty well at the moment and enjoying spending time doing things I love, like enjoying my kids, hanging out with friends or volunteering on good days"
Hannah- I stay silent and my aunt (also my caregiver) does it for me. She usually says that I am hanging in there or that I am still fighting. Then she just changes the subject. And, if they persist, she just says that we just don't want to talk about it.
Kimberly-I have buffer zones set up. There are certain things that I will and won't talk about, my husband and close family members know that the last thing we want to talk about is my health since we deal with it every day. I try to avoid large groups of people because it kicks up my dysautonomia symptoms anyway and then people ask more questions. Often I'll go lay down and end up taking a nap. Self care needs to be planned along with strategies for how to address your health towards others.
MaryAnne-I only have get togethers with friends who are like family and like to snuggle on the couch after a meal chatting or snoring in a carb coma! That was Easter! And they helped clear the dinner table. Only supportive tribe invited to my house! I just say it is challenging at times but I'm managing it. That like diabetes you manage it and the good news is I told my kids I'm not dying from it and I'd be around to drive them crazy. How are you and your family this year doing? I did this with a neighbor I didn't know too well and learned a family member has survived chemo and we expressed gratitude the ordeal was done and I was invited to their house for July 4th party with grandkids. So it became positive, I get to learn about a whole new family. Everybody's got something. We're all in this together.
Lisa-I'm a very matter-of-fact person (sometimes it gets me in trouble without knowing it). If it is someone that *only* ever asks me about my health every time they see me, I'm known to say "there is more to me than my illness. Why don't you ask me about other things like my kids, my husband, my crochet projects, my opinion..." Then they usually get quiet. But next time they tend to ask non health related questions first.
Kelsey-When people ask about my cane and I don't feel comfortable talking about it that day, I say "I use it because it makes me look taller" or "I was bitten by a shark". It usually gets a laugh. I tend to use jokes a lot, something that I am very thankful that my therapist taught me.
Charlene-It depends. I usually try to see it as a chance to spread awareness and education, after all most people have no idea what it is we're going through, let alone how they should and should not approach people with chronic invisible illnesses. So then depending on how much time we have together I'll adjust how much I'll get into it and will at least go into the basics then encourage them to look up more info online. But if it's that same someone you've seen before who always grills you about the same things every time and never pays attention to what you say... or when someone who's just passing by or makes those offhand casual (or ignorant) "how are you?" "You still sick?" "You any better yet?" type questions or remarks and has no intention of sticking around to hear the answers... For those situations my stock reply is that I'm "Still plugging away" then I move on.
Missy-If I want to change the subject, I’m likely to say something along the lines of “I appreciate your concern about my health. I do, so thank you. But let’s talk about something more cheerful, like _________”. Then I smile and start talking about _______. That works pretty well, and it lets everybody off the hook gracefully.
Jess- I deliver with a smile, “I’m still alive!” Which usually gets a chuckle because it’s stating the obvious. Then I follow with, “that’s what really matters!” And they agree with laughter and we move on.
Reanna- So, this is not a gathering tip but people always ask what I did to my neck, cause I wear a brace right now and I have just started making things up. I used to try to explain and sometimes I still do, so I can spread awareness but most times their face goes blank and I am know I have lost them. So sometimes (if dealing with strangers), I am a rodeo clown or skydiver. When I am at social events I try to comment on the food and ask questions about the recipes, if it is an eating event. I try to engage their interests and ask about their lives. If I am asked right out and there have been any significant developments I will tell them but quickly move on with “Enough about me! How is little Bobby Jo doing in camp”?
I hope that during the warmer months when family and friends are gathering you will now be armed with some tools to divert the conversation. Our members gave out some valuable tips today in our weekly Divas and Dudes Weigh In column. Check back next week for more tips and tricks on how to navigate Dys Life with our Divas and Dudes!
Join our Global Dysautonomia Support Network Divas and Dudes Group for support and resource on living life with Dysautonomia and its related conditions. Click HERE to send a request to join. Once you join this group you will have access to all of the DSN support groups including our Lifestyle Clubs and Caregiver community.