I faced my fears. Well, one of them at least—I launched a blog that told my story of my invisible illnesses. I talked about my mental illnesses, and I at least mentioned my chronic pain, trauma (some of them), and brain injury. The blog launched on July 25, 2016. On July 26, 2016, I woke up to a voicemail from my primary care doctor’s office requesting I call in. I spoke with my doctor’s nurse, the one I had actually seen yesterday for follow-up on an infected 9”x 4” third-degree burn with cellulitis (“Better, but not out of the woods yet” –Dr. Eisenhart). This burn, which is the result of sunburn gone horribly wrong, is the kind of random shit that happens to me—not run-of-the-mill everyday stuff. They got the results of my glucose tolerance test back that I completed yesterday: I have a new diagnosis. I have diabetes.
My reaction went something like this: Crying. Anger. Wanting to kick or hit or scream or throw something. Changing location relentlessly. Pacing. Yelling at my husband (Sorry, Jason). Crying. Hyperventilating. Pacing. Lying on the floor. Digging my fingernails into my palms. Trying not to scream…not my finest hour
I tried talking to/calling my support system. Although I know they had good intentions at heart, nobody said anything or acknowledged my feelings or reactions. No one even asked what I was feeling! Instead I got statements like:
“Buck up. Keep your chin up.” I hate any of these sayings!! Don’t you think that if it were that easy I would do it?
“We’ll use this as the catalyst for change we’ve been trying to make.” Nope, sorry, I’ve already been starting to make that change. And I don’t need a life-threatening diagnosis as a catalyst for your change, thanks.
“I’ll be by your side through this.” That’s nice of you, but A: I wasn’t worried about that. Should I be worried about that? And B: I’m not concerned about your reaction right now. I know you’re going for “trying to make me feel not alone,” but it’s MY body that this is happening to not “my side,” where you’ll be.
“This isn’t that big of a deal. Mine is easy to manage, so I’m sure yours will be too.” You were diagnosed in your fifties; I turned 31 two weeks ago. I already have a laundry list of diseases and invisible battles to fight, and I started that list three decades before you. Plus, there’s no telling that MY disease will be the same as YOUR disease. So, yeah, I’m allowed to freak out and it IS a Big Deal.
**Note: I don’t say these things to be cruel; these are people I love dearly. If someone you care about just received a brand spankin’ new diagnosis of an invisible illness, in order to best support them, you need to start where they are! The easiest and most accurate way to find out where that is is simply to ask.
I was pissed, and I needed someone to feel that with me before they talked reason. I needed to scream. I was ready to explode.
Luckily, I already had an EMDR therapy session scheduled for later in the day. My therapist asked me how I was ACTUALLY feeling, instead of telling my how I SHOULD be feeling. We were then able to process, through EMDR therapy, my feelings and immediate reaction to the diagnosis instead of making me feel WORSE for not reacting the way that I was SUPPOSED to react. It is truly amazing how much better you can feel when your feelings are validated instead of being suppressed or overlooked.
I will be honest, I don’t know a lot about diabetes. “The basics,” I suppose. What I do know is how I feel:
I feel overwhelmed. I don’t know if I can manage yet another life-threatening, life-changing, must-manage disease.
I feel angry. The biggest thing my husband said to me today, and this was after dragging it out of him, was “I’ll admit, you have been dealt a shit hand in life medically.” I responded, “Most people my age say, ‘At least I have my health’ when something bad happens to them. I say, ‘At least I’m still breathing’ which is a really low standard, if you think about it.”
I feel uneducated. I don’t know the facts about my own illness yet, let alone diabetes as a whole—and I don’t know what to research! I also didn’t know the extent of my family history until today. **NOTE: Learn your medical family history. Write it down. Ask multiple people, both sides of the tree if possible. Remember to update it every few years because, that’s right, people get new diagnoses. It may feel awkward having these conversations. That’s okay. Besides, wouldn’t you rather be asking than telling?
I feel scared. I don’t know what is happening, or what will happen. I don’t know if this will affect my other meds or illnesses. I don’t know if this is what will kill me.
I feel ashamed. I feel like I brought this on myself. I am overweight. Yes, there are a variety of medical factors that contribute to that weight. Yes, there are a variety of genetic factors that contribute to this diagnosis (such as having diabetes present on both sides of my family for at least the past two generations). But still, this is my fault.
I feel frustrated! I know I need to lose some weight, but I’m not hugely overweight. I eat healthy. I’ve been a pescetarian since I was 12 years old. I don’t normally drink much. I’m definitely more sedentary than I was before the car accident in 2014, but I do exercise (mostly walking, dancing, and yoga) a few times per week. I’ve never been into tobacco. My cholesterol and blood pressure are excellent. My indulgence is my sweet tooth. I eat in moderation, but I do eat a little bit of sweet per day (even if it’s fruit with dessert sauce, a parfait, chocolate milk, etc.). I don’t want to give that up!!
I feel powerless. See all of the above.
Diabetes honestly terrifies me. I previously worked on a nephrology floor at a major hospital in Toledo, Ohio, and dialysis is one of my biggest medical fears. It seemed that almost all of those dialysis patients had diabetes (granted, I realize that there’s a ton of people that have diabetes that are not on dialysis, but those are the kinds of crazy connections my brain makes). I also remember working with lots of amputee patients who had amputations due to uncontrolled diabetes. I know these are worst-case scenarios and I am trying hard to stop the sensationalizing that is occurring in my head, but I need some help…I need someone who speaks “my language,” and has the patience to really be there for me.
I am continuing to go down my support system list. And then I start texting with my friend in Ohio, Jess, who has Type I Diabetes. Jess is one of those phenomenal friends that even if you have not spoken in a while, you pick up right where you left off when you do get in touch. I texted her with no intro (brash, I know): I was just diagnosed with diabetes. I know it’s not the same as yours because of a lot of things (mostly that I’m a fatass and you’re one of the most fit people I know!) but the thought of one more serious illness, let alone invisible illness is just too much!!! She immediately responded and after texting back and forth for a couple minutes sent me the most amazing supportive, re-framing message that I so desperately needed:
You didn’t cause this. Your body is made up of cells that you have an impact on and others you can’t control no matter how hard you try. You of all people know this. So first thing’s first. Breathe.
You didn’t cause this.
You can’t “get rid of it”
You can manage your body the best you can with the tools you can.
All this is is a wake up, a “nudge” of sorts to focus. Focusing on all aspects of you. The things that make you, “you.”
Body mind and spirit.
It’s all important.
Are you breathing?
In and out. Today tomorrow and next week won’t cure you, affect the major outcome, or anything else. So the pressure is off. It’s a silent disease as you say. You can easily ignore it. And you’ll just get used to living with the uncomfortable feelings that will soon or eventually become something you’re numb to, like any disease or illness can become.
It’s all in how you look at it.
This is just a spoke on a wheel of the whole picture of “you.”
Your body is sensitive…. to everything. And it screams a little when it’s out of whack. Mine is the same. And I’m soooo far from any textbook “perfect” of anything. I struggle so badly with this disease no matter how hard I try….so much so that I called the Cleveland clinic just today to start being seen by them. I can never master this. It’s something I’ve had to come to. And it’s been 20 years in November.
So listen to me. Breathe. We will do this. This won’t beat you or distract you. It’s another story. It’s another way you’ll armor yourself to survive. And thrive.
So yes…..a doctor is a step. It’s part of it.
But a holistic approach to you (something I know you do because you ARE NOT UNHEALTHY!) is just a new “focus”……and hey, it’s one of your top 10 (I read the blog last night!)
You are healthy. No one is perfect. A diagnosis DOES NOT DEFINE YOUR HEALTH. And you should never compare.
I hear you right now and I see you Jess. I see you.
And you are just perfect. You’re here. And you are not broken. And you will not be marginalized. And you will grow and bloom and take this and power thru it.
Diabetes is far from some stupid conventional medicine over-marketed diagnosis…..it can be a way to look at the way your body reacts to things. It’s your endocrine and metabolic system. It’s not just that you fit or don’t fit an idea in your mind of what you should or shouldn’t be. It’s a way to look at living intentionally and cleanly……knowing what you do and why, from the way you consume certain food to how you approach activity. It’s just LIFE. It doesn’t have to be a conventionally made rule book. It’s the same as the way you approach mental Health…..we can make it our own.
Pretty amazing, right? That’s why you don’t give up on your support system or your coping skills. Keep at it, even when you strike out the first few (or many) times!! Managing an invisible illness like bipolar is very tricky and can take a while to get the hang of. Even then, you have to continue to maintain your skills and stay on top of your game, as the disease will change as you adapt to it, overtime, and due to a variety of other factors. I’m a problem and puzzle solver, so I like to think of my mental illness as one big puzzle—what piece do I need to put in place next to get the best view of the big picture?
Looks like my diabetes diagnosis just brought me another puzzle, with pieces scattered all over. Let’s start building!