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It's hard to know what to say...

What to say when you don't know what to say... Supercalifragilisticexpialidocious. Ha! Just a bit of Mary Poppins humor! Corny, I know, but I needed to start with something light after my last post. That last one was heavy. Even for me. I mean I sat on the couch for the whole day after I posted it. Easy to do since we were on a “stay at home” order because of COVID-19, but still!

In all seriousness, my last post about when I met Fear needed to be said. I promised myself that when I started writing about all of this, I would speak from the heart and tell the truth. Even if it’s uncomfortable. Especially if it’s hard.

So, what do you say when you don't know what to say? My husband and I have heard the words, “I don’t know what to say” so many times during the past two years. Generally people mean well; they've heard our story and are shocked that a simple virus turned into life-long illnesses. They stumble over well-intentioned phrases and are kind. Sometimes, especially when they've heard of another set-back they stutter, "I just don't know what to say". I think we are all faced with this dilemma at some point in our adult lives. You know a friend is going through a hard time, and you are truly at a loss of words. It’s hard to know what to say to give comfort to someone who is struggling. We search for the perfect words, but end up feeling like we came up short.

I think it’s important to remember that the person who is going through the hard time, may not know what to say either. Sometimes, it feels like I’m being put on the spot to say something meaningful or profound, when really I just want to order a coffee and not think about things for a bit. I think people look to us for comfort, and a lot of times we come up short in our responses. It's uncomfortable and hard for us too.

I’m not a therapist nor do I have any training on giving advice, but I have had my fair share of uncomfortable conversations lately. What this in mind, I've decided to write some things that people have said that have been very helpful...and other things that have not been very helpful.

Helpful things to say:

  • I’ve been thinking about you, or I’ve been praying for you.

With this statement, you are giving me the opportunity to say “Thank you” and nothing else. And sometimes, that’s enough. Plus having positive energy and prayers sent my way is truly lovely. It always lifts my spirits up.

  • Do you want to talk about it?

You are giving me the opportunity to say, “yes, I want to talk about it”, or “not really, not today”, which is a good thing, but this question is tricky. Please don’t ask how my son is doing, unless you really, really want to know what is happening in our lives. Some days you may ask this question and get a “he’s fine; we're good” response but other days you may just have opened the tap at the peak of my emotions. All of a sudden you are drowning in all of my frustrations with medications, insurance companies, and medical devices that aren’t working. And, trust me, I can tell when someone doesn't really, really want to know. As I am spewing forth all that has been happening, unfiltered, the listener gets this glazed-over look and I know that they stopped listening about 3 minutes ago. Uh-oh. I've overwhelmed them. They peaked into my life and are now really, really wishing they hadn't asked! However, if you really, really do want to know and you sit there for the full 10 minute dissertation, thank you. Sometimes all I need is someone to listen to me rant for a bit.

  • How are you? What have you been up to?

I do have two other sons, a husband and an active, busy life. I know I look totally consumed by these illnesses on some days, but I can talk about other things. At least, I try to.

  • I heard about your son and I’m sorry.

Saying that you are sorry someone is going through a hard time is always a nice thing to hear. No matter what.

Since I’ve decided to be completely honest, here’s what NOT to say:

  • You look really tired.

Unless you are a very close friend or a beloved family member, and you are extremely worried about my personal health, don’t say this. Ever. I mean, come on! How can a person respond to this? “Thank you”? “F@*# off”? Just take it from me - don’t say it.

  • At least it's not serious; it’s not cancer.

I have heard this comment more than I’d like to recall. This is an awful thing to say. It’s like watching me drown and throwing me a cement block instead of life preserver. Really? You want me to think about another life-threatening disease? And be thankful my son doesn’t have it? Really!?!

  • Look on the bright side…

This sounds like a positive thing to say, but really it’s a way to minimize what I’ve been going through and look at things from your point of view. Unless you are my therapist, you do not have enough knowledge to tell me to look on the bright side. Yes, I am thankful that we have a great doctor, and medicine to keep him alive. Yes, I am thankful for that - obviously. But since you have not walked in my shoes, you really have no idea what my “bright side” is, so please don’t say it.

  • I could never get diabetes. I hate needles.

Ummmm...yeah. This isn't something you get to choose.

  • Isn't he too skinny to get diabetes? Just have him exercise and stop eating ice cream.

Ummmm...type 1 diabetes doesn't work that way. Nor do the other two autoimmune diseases he has.

  • I just heard about _________ (insert: apple cider vinegar, ginger, honey, any type of dietary or vitamin supplement or some new blue pill Walmart is selling) that cures diabetes. Have you tried that? Just no.

  • I know exactly what you are going great-aunt's neighbor's cat has diabetes and it's awful.

Yeah. It's the same. EXACTLY the same.

  • He's now an adult. You need to let him handle this by himself.

This probably sounds like a positive thing to encourage, however type 1 diabetics do not get through life alone. They always have a back-up person, watching and helping when needed. It may be a parent, a grandparent, a close friend, a partner or a spouse...but they have to have someone who knows they are a type 1 diabetic and what to do in case of an emergency. Of course, they manage much of the disease on their own: testing blood sugars, daily insulin shots, watching their diet, and counting the carbohydrates they consume. However, when their blood sugars get into the bad high range or the bad low range, they cannot think clearly. Their brain doesn't function properly. I have a friend who is 60 years old and has had type 1 diabetes for 37 years. He wears a continuous glucose monitor (cgm) and still needs daily back-up support: one daughter gets alerts for his high alarms, another daughter for his low alarms and his wife for the emergency alerts (when alarms are sounding for an extended period of time with no change). If he doesn't make necessary corrections and they don't see his numbers coming back into the good range, they call and pester him until they are sure he is okay. He is an active, healthy, smart businessman and he still has people watching out for him. This is what we, as caregivers and back-up supporters, do. When you are diagnosed with type 1 diabetes, your whole family, or support system, is diagnosed with type 1 diabetes. Believe me when I say, we all live through the ups and downs of this disease. Every day I watch as my son learns how to manage his type 1 diabetes and his other two diseases. He makes an additional 180 decisions every day to stay alive - all diabetics do. And he does an amazing job acting as a pancreas, both adrenal glands and a thyroid gland. I watch and I help 24 hours a day, 7 days a week. His diagnosis is my diagnosis. This isn't a choice; it's a necessity and I love that I am able to help him.

Does all of that sound too preachy? Maybe a little snarky? Oh well, I told you - heartfelt and honest.

Look, as someone who has been on the receiving end of these comments, I know most people do not mean to be unkind. My best piece of advice is to just slow down and take a breath before you speak. Know that the person who is going through a hard time is probably tired, probably stressed and probably overwhelmed. Speak kind words from your heart and really you can do no wrong - but slow down enough to think about what you say before you say it. And if you truly can't think of anything to say, that's okay too. I understand. Sometimes there are no words. In that case, hugs usually do the trick.

For any of you going through a really hard time yourself right now, please try to open up your heart and your mind to others. You need to try to be there for your family and friends. I once sat through an entire lunch and did not even ask what was happening in my friend’s life. Luckily, she is an amazing friend who loves me and puts up with me, even when I’m not being a good friend to her. You need to know that it’s okay to escape your reality for a bit and listen to what’s going on in their lives. Connect. Smile. Feel something different. Laugh at their stories, cry with their heartbreak and be a part of their world.

I have learned that I have to have more in my life than his diagnosis. It is a part of my life, but I cannot let it consume me. If I do, Fear never leaves me. Instead, I try to find a little bit of peace. I set my reality aside for a bit and just breathe in the life of those around me.


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