Blog Post: Being Sick in a Pandemic with a Chronic Disease

So being sick in the middle of a pandemic while one has a chronic disease is a kinda weird shitshow. Pardon the phrasing, but uh, it’s been strange. So far I have gone through “it’s probably a cold, but get tested for COVID-19 if you don’t feel better by xx.”The nasal scrape test is a little weird, not nearly as unpleasant as it’s been described, sort of like snarfing water but the sensation stays for longer. COVID test: Negative. Next call.  Might be allergies. It’s not allergies, but I’m not that good at standing up to doctors. Getting better, lots of practice and all, but especially with stuff like this – “minor” stuff – it’s harder to get all firm and be like No I Need An Answer.

I mean, it’s a cold, right?

It’s not all that important.


T had to push me to call the doctor.  The first time.  Then the second time.  Also the third time.

Okay, no, by the third time I was pretty certain soemething was wrong.   I still can’t really breathe that well – okay, that’s an understatement.

That’s my problem.  I end up either whining or understating everything.

Or engaging in obvious hyperbole.

So I wrote a letter to the patient portal at my doctor’s office (patient portal fantasy: you go through a door and a doctor tells you to take a test and wait a week.  you do it again, and again, and again.  It’s sort of like tyhe combination of a portal fantasy and a nightmare.)

It ended up sounding something like a Victorian telegraph.  I don’tknow why, that’s just the feel it gave as I wrote it.

(I checked.  I don’t have comsumption.  At least, I don’t have syumptoms that match it close enough to worry about).

So here I am, walking through this portal fantasy nightmare, writing victorian telegrams… not able to breathe 1/3 as well as I ought to and getting so tired I spent the weekend either lying in bed or sleeping or both. It’s um, pretty weird.  I don’t feel sick, you know, stuffy nose, anything like that, but there’s the whole chest congestion thing and the sometimes sore throat thing. And then I just get tired and fall over.  Not literally!  I’ve stumbled, but that’s normal.

But I was talking about the weird part of being sick with a chronic disease in the middle of a pandemic.

So it is weird.  It’s like, I talk to the doctor and his first goal is “is this covid?” I wasn’t calling to see if it was covid, I was calling to find out what was wrong with me.

And then I’m talking to the NP the second call around, and she’s like “is this your MS?”

And I’m like I don’t know, lady, you’re the doctor. But then she ends up being like “this is seasonal allergies.” (spoilers, it’s not).

It’s just… weird.  Like people, there is a non-Covid non-MS thing wrong with me, can you just get to that part?

Maybe tomorrow.  Fingers crossed?











5 thoughts on “Blog Post: Being Sick in a Pandemic with a Chronic Disease

  1. I hope you find out what it is and feel better soon!

    It reminds me of when I talk to tech support, which I only do when I’ve tried everything I can think of, and they want to go through their script which starts with everything I already tried.

  2. Oif, I hate fighting with doctors. Best wishes for getting that part over with ASAP.

    T sounds willing to be pushy. Can he sit in on (some of) your medical appointments and be stern?

    • he’s been helping by having me take notes about things he wants to say. Today’s dr. appt (and chest xray!) was possibly more helpful, though we still don’t know what’s going on.

      • Eugh I am sorry you have to go through this.
        If it’s at all possible, take T with you. Not listening to the patient, poorly studied chronic diseases, not explaining even when outright asked, and otherwise general gaslighting of women by doctors (of all genders), is a thing so frequently discussed that I feel like it’s a better use of time to go in prepared and assuming it’ll happen, and be pleasantly surprised if it does not.
        Tangetially-related, it also sounds like you’re seeing new/different doctors? While there are case notes and referral letters, I always get the feeling that the appointment scheduling doesn’t allow them time to actually read those.

        From a different-but-perhaps-still infuriating viewpoint – you have a chronic disease. Why should you, from an obviously-disadvantaged position, have to fight to convince the doctor, when you can have someone else who is willing, has more resources, and doesn’t have to wade through gender bias bs, do it for you?

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