Dealing with medical fear
February 18, 2022 8:24 AM   Subscribe

I've been sick for a long time but lately I have new symptoms-- racing heart, faintness, tingling fingers, shortness of breath, etc. That *feel* like a panic attack even though they are not. (Likely a POTS diagnosis in the offing.) I also have C Diff and feel wretched. I am scared. Like...little-kid-scared-of-the-dark scared. And my 'Don't be a baby. Suck it up.' internal narrative isn't helping. If you have experienced medical fear, what has helped you in the short term and in the long term?

I am already in therapy with a person who specializes in illness but it is a new relationship.

I have an amazingly supportive spouse. I have two young children and am so sad that they are having to deal with a compromised parent.

I have a history of minimizing my own illnesses and discomfort sometimes to the point of physical danger and often to the point of feeling a lot self loathing. I grew up in a double doctor family and stoicism was definitely the coin of the realm. It's like I never learned how to be sick.

I cannot overstate how scared I am feeling. If you have every been in a similar situation, how have you coped with your fear? And if you also have an internal voice that is not so great around medical issues, how have you changed that?
posted by jeszac to Health & Fitness (15 answers total) 11 users marked this as a favorite
I was recently diagnosed, on similar symptoms, with SVT, supraventricular tachycardia. It’s an electrical irregularity in the pattern and pace of electrical impulses that keep your heart beating. I had blacked out in public twice, with initial tests reading normally, but then had to wear this awkward contraption that measures more specifically (and if you have an episode, you have to call the manufacturer to alert them to read it -!?!). Then I got an Apple Watch for this very purpose, and it read my heart rate at a symptomatic point at 225. After that, I had an “ablation,” a ‘procedure’ rather than a surgery (but does involve anesthetizing), and what a relief. That was last summer, and so far so great! Good luck.
posted by mmiddle at 8:32 AM on February 18, 2022 [2 favorites]

Best answer: I have health anxiety too. Sympathies, it's horrible.

Here are some small mental reminders that help me in times of stress:
- telling myself that my fears are legitimate (health problems are scary! Being out of control of your own body is scary!) but I don't need to let them control me. I can still do things that make me happy, that take my mind off things, etc. I'm in charge, not the fear/worry/stress.
- this is a bit of dark humor so I don't know if it will help you, but I remind myself that if there's something wrong, there's nothing I can do about it right now, so I might as well just accept it. Strangely this helps me feel more in control -- I can seek out help for symptoms and so on because, well, it can't get worse!
- doing a realistic "what's the worst that can happen" assessment, step by step, while keeping in mind that medical science is amazing and has done some brilliant things for people much sicker than me.
- creating a character for The Anxiety can be helpful. That way I can get annoyed with it and tell it to fuck off.
- giving myself a set time in which to be anxious. Sometimes I'll say "okay, I can worry about this for 10 minutes, then I'm going to move on and do something else". I also have a rule about not paying attention to anxiety between 9pm - 9am (usually the worst hours).
- focusing on what I can control. I can't control potential bad health things to some degree, but I CAN do things for myself like booking healthcare appointments or making sure to stop and HALT.

I also heartily recommend using a site blocker on your various apps/browsers to block WebMD/healthline or whatever other sites you use when you want to consult Doctor Google, if that's an issue with you.

Also, for right now: you are legitimately sick. It's valid to feel wretched! Have you said that to yourself? "I am sick, I feel gross, it's okay for me to feel gross right now"? It might help to acknowledge that and turn something that's scary and unknown into something you've recognised to yourself.
posted by fight or flight at 8:56 AM on February 18, 2022 [10 favorites]

Best answer: I've been having ongoing stomach issues and earlier this year my doctor misread an x ray which lead me to believe that I had a much more serious problem than it turned out to be in the end. So I very much empathise with your "scared kid in the dark" fear. I have pretty bad anxiety and all of that combined created a perfect storm of fear for a while.
What helped me to get through the worst of it were also the techniques that help my anxiety.
Noticing how often my fear is centered around the lack of control and fear of simply not knowing what might happen next. Acknowledging that I'm not in control, and interrupting my attempts to control the uncontrollable.
For example, I tend to endlessly ruminate on my symptoms, "rehearsing" my next doctor's appointment as if that will help in any way.
When I notice that I'm doing that, I divert my attention to something else. Ideally doing something simple and useful.
I try not to berate myself, just tell myself "oh, I'm rehearsing again".
Another example of negative rumination is that I have imagined conversations with friends or family in which I try to explain to them what is wrong with me. I think this is a way to attempt to control other people's reactions and judgment about my health.
When I notice that I'm doing that, I divert my attention to something else.
Noticing my negative inner dialogue helos, for example, changing "if it turns out that I have x I could never cope" to "if it turns out that I have x, I will learn how to cope"
I also find it helps me to be very kind and gentle with myself, especially in the mornings. Acknowledging that I am sick, and making a list of the minimum things I need to get done in the day.
I write down only the stuff that absolutely have to get done, and let everything else go. If I manage to do more, that's a bonus.
I also realised that I am able to reassure myself, and to recognise and interrupt reassurance seeking from others, or from Google.
Googling symptoms and medication in an attempt to reassure myself is a bad habit that often ends up worsening my anxiety as I inevitably stumble upon something upsetting and alarmist.
I have a go to list of fun, distracting, reassuring things to do instead like watching cute animal videos or comfort reading a favorite book.
Or just grounding myself, spending a minute or so being mindful of my breath, what I'm hearing and feeling and smelling.
Wishing you ease and peace of mind. May you find comfort and beauty in your everyday surroundings.
posted by Zumbador at 9:07 AM on February 18, 2022 [6 favorites]

Best answer: I have multiple myeloma, a bone cancer that is currently considered incurable. I get blood tests to measure cancer markers every month and, unless there is some kind of huge medical advance, these tests will continue for the rest of my life. So once a month, I am waiting for blood tests results that will tell me if the cancer is currently under control or is getting worse again. And my heart is in my throat when I go to the portal to see the results. Random pain also makes me worry - is that back pain a pulled muscle, or is the cancer affecting my bones? (Some people find out they have myeloma when a bone breaks.) I've been dealing with this since 2016, so I totally get the fear you're feeling.

The thing that has helped me the most is something my therapist said to me right after I was diagnosed: You don't know what is going to happen. That is my mantra when I'm feeling scared. It has the advantage of being completely true - what happens could be good or bad - I just don't know. That seems to help me avoid falling into a spiral where I'm thinking up scary outcomes that may never happen (which is a very human thing to do - don't be hard on yourself when your mind goes there).

In keeping with that, I had an Ask about dealing with cancer right after I was diagnosed, and someone suggested thinking about the first people for whom AIDS became a manageable condition rather than an immediate death sentence. That was in my lifetime. Medical science is amazing. There are all kinds of advances, and I can be very hopeful because new treatments may be just around the corner. Also, I very much like and trust my doctor. I did not like my first oncologist, and it's a night and day difference to have an oncologist I feel confident in. So if this does turn out to be something difficult, I can't overstate the importance of finding a medical professional you can trust.

(I'm also very interested in studies on hypnotism to help people deal with this kind of thing, but I've been unable to find a science-based practitioner in my area - by which I mean one who doesn't also do past life regressions. If that's available near you, it might be worth checking out.)
posted by FencingGal at 9:10 AM on February 18, 2022 [14 favorites]

Best answer: I want to speak to the part of you that is feeling sad about your young kids having a "compromised" parent. I think it's really important to let go of the pressure (internal and external) to be a certain kind of parent to them. You are still their parent! No matter what! You love them and they love you and that is more than enough!

Enjoy the things you can do with them. If that's lying on the couch and watching TV, great, watch TV with them. If it's them coming in to give you a hug before your spouse puts them to bed, great, enjoy that! Maybe the lesson you wanted to teach them wasn't "it's important to take care of yourself when you're sick" but, that's the lesson they will learn from you, and that's okay. What's most important is that they know that they are safe, loved, and cared for, and between you and your spouse, you've got that covered. Don't waste your time apologizing for being something you can't be right now. Let being yourself--even a sick version of yourself--be enough.
posted by you'rerightyou'rerightiknowyou'reright at 10:22 AM on February 18, 2022 [11 favorites]

Best answer: I have a whack ton of chronic illnesses, medical trauma, and my daughter is three.

Today I am bedridden. I have new symptoms, they scare me, I have a ton of appointments to set up. I feel like they will be fruitless. I dread almost all of them. The mammogram I find sort of fun.

My husband and daughter are playing in the next room. I miss them, I feel guilty.

But it's a low moment. I remind myself of that.

My daughter knows I love her. She can come in at any time to say hello and get a kiss. I'm not "compromised," I'm just different, and everyone is different.

She will grow up seeing disability as part of the world, and she will grow in empathy and understanding.

I will make those appointments. My symptoms will subside. I endure, and I am loved.

Peace to you.
posted by champers at 10:31 AM on February 18, 2022 [10 favorites]

Best answer: You have lots of legit reasons to be scared!

And as I read your symptoms, it struck me that you also have your body creating signals of physical discomfort that your brain will interpret as, "OMG WE ARE SUPER SCARED!"

I had some stomach problems that resulted in a constant tummy ache, and the unfortunate side of that was that my brain was basically constantly receiving signals of physical discomfort that it interpreted as, "WE ARE ANXIOUS! OUR STOMACH HURTS WHEN WE ARE ANXIOUS SO OH MY GOD WE MUST BE SO ANXIOUS RIGHT NOW!" And if my brain thinks it is anxious, then, being a smart and creative brain inhabiting a person with a pretty high-stress job, it can find plenty of things to be anxious about. And being anxious definitely contributed to MORE stomach pain, so it was a vicious cycle.

With my stomach pain and associated anxiety, two things helped: 1) Mindfulness, calming my mind and paying attention to what was really happening both with my feelings and with my physical body, and training myself to ask, "Am I actually worried right now, or does my stomach just hurt?" 2) Treating the physical symptoms.

Here's hoping that you have an accurate diagnosis soon and can find treatment that helps your symptoms.
posted by BrashTech at 10:48 AM on February 18, 2022 [4 favorites]

Best answer: If your fear is being driven by the symptoms you're experiencing? Sometimes it helps me to try to figure out if my fear is being pumped up because my heart is racing for biological reasons. It helps me clear my head. Like "Whoa, racing heart? Short of breath? Sounds like we're under attack! Better get ready!" It helps me to be able to say "Ok, racing heart, shortness of breath, I'm not under attack, I'm just sick, I will do the things we do for a sick person, I will take care of this sick baby (me)." It helps. It also helps to express this verbally to your partner. This old fashioned stoic stuff is no good. You have to express what you feel for the same reasons you have to express a dogs anal glands.
posted by bleep at 11:45 AM on February 18, 2022 [2 favorites]

Best answer: This was a therapeutic technique that I had never heard of before but that has been incredibly healing and liberating: Imagine that scared inner child in you, and give them a hug. Have compassion and love for that scared child in the dark, give them (yourself) the kindness and comfort and understanding they need.

Maybe wrap yourself in a warm blanket, maybe crawl under a table or into bed or lean up against the bed, maybe make some tea for yourself and then hold it and shake. It's okay to be scared, and the part of you that is scared here deserves love and kindness. I think sometimes we worry that if we admit to the fear and if we're kind to the part of ourselves that is scared, the fear will grow and take us over - that if you crawl into bed and wrap yourself in a warm blanket you'll never get out again. But I find it's the opposite: a need (for love and understanding) that isn't met will just get louder and louder.
posted by Lady Li at 12:32 PM on February 18, 2022 [4 favorites]

Response by poster: Your responses are so wise and so kind. Thank you from the bottom of my sick and scared heart.
posted by jeszac at 12:35 PM on February 18, 2022 [8 favorites]

Best answer: Lady Li’s post above reminds me of this short 5 minute self compassion meditation . It is a super short time investment, so worth a try. ❤️
posted by hilaryjade at 1:22 PM on February 18, 2022

Best answer: I have severe health anxiety as part of my OCD. I’ve reduced my anxiety by like 90% via ERP therapy - it was hard af and terrifying but so, so worth it (honestly probably life-saving for me).

Sending hugs <3
posted by chaiyai at 3:11 PM on February 18, 2022

On a completely different tack, as a nurse who has taken care of way too many c-diff patients, I wonder if you could be having electrolyte imbalances if you are having diarrhea. We tested electrolytes frequently and had a formula for replacing fluid and electrolyte loss from patients with copious diarrhea, often from c-diff. You have no idea how profoundly electrolytes can be affected by frequent or large volume diarrhea (also from prolonged vomiting, as in hyperemesis of pregnancy). Feelings of faintness and a rapid heartbeat can both be related to hypovolemia (dehydration from fluid loss), tingling and irregular heartbeat to electrolyte imbalance, and high rates of respiration can be experienced as the body attempts to regulate itself in certain conditions, of which profound electrolyte disturbance is one. Can you talk to your physician and describe your symptoms and perhaps ask them to test your electrolytes? It's simple to do, and if they are normal you can proceed to other interventions.

One simple tip for people who have lost a lot of fluid over time, or have reduced fluid intake is that they often reduce their urine output as the body tries to reduce water loss. The kidneys regulate urine volume, and can preserve fluid if you are dehydrated. Is your urine concentrated (deeply yellow), reduced in volume and less frequent? That could indicate dehydration.
posted by citygirl at 3:41 PM on February 18, 2022 [4 favorites]

I get paroxysmal atrial tachycardia. As the name implies it just happens. Symptoms line up with those in your original post, and yes, before I knew what it was it was scary as hell. Took quite a few trips to the ER before I ran into the doc who said "Oh, you have PAT. Take this med and it will not happen anymore."
posted by rudd135 at 5:08 PM on February 18, 2022

Best answer: It’s ok and good to medicate anxiety/panic if you can. It’s not a moral failing to need anti-anxiety medication while you are having medical anxiety! I have previously underestimated the number of my symptoms that are purely 100% anxiety driven and was very resistant to treating my panic attacks because I felt like “but I know what this is is! It’s not a panic attack!” And that was partially true, but also I absolutely was ALSO having a panic attack brought on by my symptoms. And with things like POTS there’s a stress feed back loop and treating the panic attack really really helps with the underlying symptoms, too.

I’m still not great at managing my medical anxiety. But having a doctor who thinks that it’s worthwhile to treat the psychological impacts has made an enormous difference, and I think it’s worth telling your medical team that you need help managing the anxiety all this is producing. You don’t just have to white knuckle it.
posted by Bottlecap at 7:46 PM on February 18, 2022 [2 favorites]

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