what to say in the face of insensitive comments

[healthysquirrel]

Hello everyone, 

Hope you are having a nice day. I have seen so many blogs or links about how we should speak to someone with chronic illness, mental illness and grief. A LOT of nice "what NOT to say" websites, but my question to all of you is how do you react to friends who do say insensitive or hurtful things without creating even more drama?

I like to air things out right away, but I am looking for a phrase that slips off the tongue.

I tend to want to say "if my illness is an inconvenience to you, get a therapist"

Conflict and complicated relationships are not my thing as I try to heal.  I am looking for a diffuser phrase that does not start a fight.

The other night my friend laid in to me about how she felt about some of my behaviour. That was hard to hear and super bad timing (celiac, lyme, ammonia, separation etc at the moment) and I took it like a champ and actively listened.
To her credit, I am a flawed human being and I'm on a new treatment for high ammonia levels and lyme disease that is not really making me feel too great.

Between her numerous grievances, she said some things like "you ONLY talk about your illness" (she asks me about it, so I answer) and the worst for me was "it's not your fault, but with my other friends it is less complicated because we can eat together". I won't list the rest.

I will take some distance from her because I need to heal and either be around people who support me or be alone right now.
it was a good reminder that I really need a quick response. It took everything I had to stay in non violent communication mode. 

I want to be able to communicate and help people understand that they are being insensitive in a direct, but kind manner. I am very nice and super caring, but if someone bites me, I do tend to bite back, so I am trying to be more open and accepting that chronic illness makes people uncomfortable and face their own reality of mortality etc. 

Oh and this expression “It’s amazing how chronic illness turns friends into strangers and strangers into friends.”  is so true, I have somehow made more friends recently than in the 13 years I have lived in switzerland. I never thought that it would be possible to make new friends while feeling so awful. Ha!
I am attracting people who either understand or don't make a huge deal out of it and just like to talk to me about other things and laugh. 

I had to really lower my expectations and sort of grieve the dream I had thought that my best friends and my husband would surely be as present as I was when anything happened to them. It is simply unrealistic and I am becoming an even stronger person in the face of this! 

Have a nice day everyone!

[Ennis-TX]

I also talk about my disease a lot, it rules my life, it times when I do everything, it keeps me from going out much or doing what many consider normal social activities....I have stacked issues with celiac, odd allergies, pancreas issues, ulcerative colitis, autism, bipolar, adhd. I learned form years of abuse and dealing with people that endangered my life to be upfront about my issues and know I will only deal with humans on my terms (away from things that make me sick) and if they do not understand that or do not respect it they do not belong in my life.
I feel a deeper bond to others i just meet with celiac then friends or family I have known for decades that do not have any of these issues. Sorta makes me feel like a different species.

[Scott Adams]

We’ve published some articles that you may find helpful:

 

 

[cyclinglady]

Just as some foods can be toxic to you, so called “friends” can also be toxic.  Maintaining emotional health is just as important.  I have a few true friends that I can count on in times of trouble.  True friends.  The kind of friendships you can maintain for decades.  Life is too short to have unsupportive people in your life.  Celiac disease can really weed out true friends, that’s for sure.   Life is too short to hang around unsupportive people as Ennis suggested.  

I am also lucky that my own hubby went gluten free 12 years before me.   How ironic that I was diagnosed with celiac disease so many years later, but it has been really good for us.    

I try to host most parties or gatherings (maybe because I have  the time and I am a very good cook and excellent baker) or my true friends have learned that I will bring my safe food to events and they are not offended.  I also have been instigating active gatherings (hikes, walks, bike rides) with friends instead of eating.  

I wish I had a better response for you.  I am sorry that some of your “friends” are really not friends.  But I am confident that you will pull through!  

[Beverage]

It's not easy. I try to explain in ways they can relate to, like you know I can't just go down the flour aisle at the grocery store, because I would breathe in flour and that goes down the same way as eating it.  I could not help with remodeling the upstairs bathroom because of the gluten from the wall board and plastering was in the air...  I explain that you have to be more diligent like a peanut allergy, and most get it with these examples.

But at a recent family thing, a sister in law was sticking her fingers that she had just used to eat a sandwich with, into a bag of candy (which I don't eat anyway but regardless...), and asked if I wanted one because they were marked gluten free, and I said, thank you but I'm sorry, no, they're cross contaminated unfortunately because they've been touched after you ate other gluten food.  And she gave a snort and said "you might as well just live in a bubble .... ha ha ... like bubble boy". 

Well, I had defended her insensitive comments to others for over 30 years.  No more.  I will say hello and light niceties, but I just cannot talk to her like I care anymore, that was just over the line.  I guess it hit the core of how we feel and how our life becomes, but I just do not have to be in the vortex of someone who will go to that level.  Some people have to have karma teach them to see things from someone else's shoes, but most don't, they get it and are very understanding when they learn the facts of the disease.  And to those people, it is worth a little time to educate a little if they want.

[healthysquirrel]

thanks very much everyone for your feedback and comments, I've gotten the bubble-boy comment so many times and people act as though our issues inconvenience them.

@Beverage I am happy that you don't have to waste your time defending your sister in law! Life is too short for sure. Simple easy relationships are way more fun anyway. 

I have lost more friends since, but now I notice that they stressed me out. The energy was off and it was draining to be around them, I could feel that they were annoyed and hated when i brought up my health, which isn't easy since i've been in and out of the hospital for other reasons. 2 days ago i my friend said so many insensitive things about my health in a row. I realised that it was a huge relief to have her out of my life. So true about toxic people and actually quite fun when they eliminate themselves. hahahaha

Pruning the friend tree is such a huge part of chronic illness. We can use it to as personal growth. I'm not sad anymore and if people exit my life, they are free to go. I have myself.

[Ciglee]

Don’t let your illness define you.  If you talk about it all the time, yeah, people will not want to be around you.  People can be sympathetic, but eventually they lose interest.  No one wants to talk about your illness all day.  Really. They don’t.   You are the one pushing people away with the constant talking about your illnesses. 

[NNowak]

Every one of us has something that challenges us. Some find out early in life, others aren’t as fortunate and discover too late. I choose to believe we are fortunate to have the opportunity to live a healthier lifestyle that improves health. As you navigate through additional challenges, add it to your list of things you are fortunate to know about your health. The opportunity to feel good once you make adjustments to accommodate the challenge is a blessing. 
Focusing on your challenges as brokenness defies how the other person sees you. Your friends see you as a whole person, not various labels consisting of your diagnoses. If you aren’t feeling well enough to go out, simply state that. If you are concerned about your food choices when you go out, make suggestions of places you prefer to eat - that doesn’t mean you will always be able to dictate the dining place as there’s give and take in relationships. You can always pop in after the meal to share a beverage. A sharp response will destroy your relationships and leave you feeling conflicted, so I’d recommend silence - less is always more. Life is too short to always battle. If you can do the above with your group of friends and still have mutually supportive relationships, then you’re in good company. If not, accept what is and seek peace by moving on.

Nobody could possibly understand the opportunities you have to manage for your health. Stop wasting your energy trying to explain it, and enjoy being a whole person with your friends. 

[healthysquirrel]

I agree with moving on. At the time i wasn’t yet in the acceptance phase. She was my closest friend and yes, I was very ill and wasn’t able to be ‘whole’ at the time. 

I came to the forum looking for a quick and phrase to diffuse situations easily. 

I do go join people after they have eaten. I am no longer friends with that person. She was absolutely awful to me again even after months of me not mentioning my health once. I don’t purely focus on illness. I worked with this person. She noticed  I wasn’t at work and called to ask where I was. I ran out of stories to tell because I was in the hospital. We have not spoken since. Thanks to being ill, my life has gotten much more simple  I didn’t realise how stressful she was ?

[NNowak]

Sounds like a toxic relationship. People aren’t always accepting of changes that alter the culture of the relationship. As my teenagers say, “You do you,” and focus on blessing yourself with health. Negativity makes us all unwell. 

[healthysquirrel]

16 hours ago, Ciglee said:

Don’t let your illness define you.  If you talk about it all the time, yeah, people will not want to be around you.  People can be sympathetic, but eventually they lose interest.  No one wants to talk about your illness all day.  Really. They don’t.   You are the one pushing people away with the constant talking about your illnesses. 

I had not mentioned my health one to her in 4 months even during the worst of it, before that time I had only mentioned it when she asked. 

My illness doesn't define me, i just came here to the forum to ask for help for a few phrases to diffuse situations when someone says something harsh, that is all  

 

 

[cyclinglady]

4 hours ago, healthysquirrel said:

I had not mentioned my health one to her in 4 months even during the worst of it, before that time I had only mentioned it when she asked. 

My illness doesn't define me, i just came here to the forum to ask for help for a few phrases to diffuse situations when someone says something harsh, that is all  

 

 

Please do not take this member’s response to heart.   You can look up and see her four last unsympathetic responses.   She rarely contributes and has not been following your previous posts.     I can only imagine that she is having an off day or that maybe someone has told her that she complains too much about her own illness.  She might even come to celiac.com, when she had had a gluten exposure.  Who knows?  She does not tell us.  

But I know you.  Well, maybe better than Ciglee, because I have been active on the forum.    While her comments may apply to many and she is right, it is out of context.  

Hang in there.  There are good friends to be found.   And whine all you want around here, because we get it (at least most of us).  

[healthysquirrel]

Thank you very much for your support @cyclingkady. I didn’t take it badly, Ciglee had valid points, but thought I would take a moment to contextualise in case a newbie was on the forum looking for help on this subject. Clarity is always best when subjects are searchable 

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have a nice day eveyone !