Gaslighting’s toll

December 17, 2019

If you had asked me a few weeks ago if I had ever been the victim of gaslighting by doctors, I would have said no. Which is sort of funny, because this blog is full of examples, written over the past 8 years. Somehow, I didn’t see it.

Sure, I knew that doctors had told me that it was all in my head. Or that I was making it up in order to get attention. But that’s not the same thing. Except as it turns out, it is.

My therapist used the word last week as we discussed this topic. As soon as she said “gaslighting” it clicked that yes, that’s what had been happening. A few days later, someone used the word again as they talked about medical professionals. And it all fell into place.

I have dealt with gaslighting by doctors for almost 30 years, so no wonder I get nervous about appointments. No wonder I have an inherent distrust of doctors. It makes sense that on dating apps, I avoid doctors and other medical professionals. It all fits.

The problem is, I still need doctors. I need them to order tests and to write prescriptions. Sometimes, I even need them to help me figure things out. The problem is, I don’t trust them. That’s why I was so surprised by a simple suggestion several weeks ago. I was debating whether or not to take a prescription. My symptoms had gone away before I had been able to start it, and I didn’t want to take it unnecessarily. Talking to my therapist about this conundrum, she suggested that I ask the prescribing doctor for his advice. Wow, I hadn’t thought of that! She wasn’t surprised. I learned a long time ago not to trust doctors. I figure things out for myself as much as possible. Still, in this case it made sense to ask, and I’m glad that I did.

I know there are good doctors out there. Some have them have been incredibly helpful. Not all of them subjected me to gaslighting. But just like I clearly remember the time I backed into a telephone poll while parking last month but have completely forgotten the dozen other times I parked in that same spot without hitting the poll, it’s the doctors who treated me badly who stand out most in my mind. They are the ones that scare me, that put me on edge, even when I know I still never see them again.

Sadly, I am not alone. There are many of us who have been subjected to this horrible treatment. It is no wonder so many of us distrust doctors and the overall medical system. I am now working on this with my therapist. I will never undo the damage that was done to me physically by ignoring my symptoms, but maybe one day I will have just a bit more trust in medical professionals? Maybe. Until then, if you have been, or are currently being, gaslit by your doctor, know that you’re not alone. And if you can, find someone better.

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Posted by chronicrants

The all-too-elusive “day off”

December 4, 2019

I don’t have a job, but I work damn hard. Every day is long and full. Some days I go to medical appointments; some days I see friends, though not as often as I would like; some days I stay home and work on a long list of tasks. None of those are relaxing. Even when we don’t work traditional jobs, we need days off. As I sat down to write today, this felt familiar, so I did a quick search on this site and found that I’ve written about this before. In fact, I’ve written about this several times, and the past two were last December and the December before that. Hmm. That might be telling me something.

2019-12-03 09.08.11

I have been making more of an effort to give myself space for relaxing time. In August, during a couple of abnormally not-incredibly-hot weeks, I took several afternoons to sit outside and read a book or work on some writing. It was lovely. But a full day? That was rare.

This week we got a snowstorm. In the Boston area this isn’t odd, but it doesn’t usually come so early. I saw the forecast, looked at my calendar, and decided that I needed to take advantage of the strange weather. I was exhausted. I needed a break! And I had a big week coming up, too.

So I took a day off. I didn’t feel too sick to do things; I simply didn’t do them. I puttered around the house. I did some laundry, but now that I have laundry in my apartment (such luxury!) that’s not much of a chore for me. I chatted with a friend via video for a couple of hours. I spent at least a couple of hours reading a novel. I baked cookies. I watched the beautiful snow falling outside, clinging to trees and coating cars. My plan had been to spend a few hours watching tv while crocheting in the afternoon, but somehow I never found time for that. I still did it after dinner, though, like I do almost every night.

Several times during the day, I felt at a loss. I was supposed to be doing something, right? What was I supposed to be doing? What was it? I kept looking at my “to do” list for the day, which is always on my desk. But this time, it was mostly empty, just containing reminders to clear snow off my car, read a book, relax.

I somehow filled the day, and felt so good by the end of it. I needed that. The next day came part 2 of the storm and I wanted to take another day off, but I had too much to do. Still, it was a reminder that I need this. We all do. We need days when we aren’t trying to get lots done. I may not do a lot in a typical day by most people’s standards, but for me it’s a lot. It’s now 3pm and I have made several phone calls, gone to physical therapy, gone to the bank, answered some emails, eaten lunch. For me, that’s a lot, but it’s more than that: it’s the obligation. What I need is days without those obligations. Days of freedom, where I can do whatever I want, whenever I feel like doing it. Again, I think that we all need that sometimes.

Not to sound like a broken record (do people still even know what that means?) but I’m going to make an effort to take more days off. So far, I have succeeded in giving myself afternoons without obligation. Now it is time to give myself more full days without obligation. These will be days for myself, with no appointments, no plans, no lists of tasks to be completed. It can all wait. One more day won’t cause problems. It’s time. So from now on, I will aim for one day off every month. Wish me luck!

Do you take days off like this? Do you find it difficult to schedule them in, or easy to do? Please comment and share your experience with days off while disabled.

1 Comment | Expectations, Rants | Permalink
Posted by chronicrants

When even the good things cause stress

October 27, 2019

The thing people forget is that even good things cause stress. Like the party I recently threw.

We talk about stress as an emotional condition that’s bad and must be reduced. That’s not untrue, but it’s not the full story, either. When it comes to adrenal fatigue, all stress can be a strain on the body. I explain it to people by saying that winning the lottery could make me very sick, and I believe that’s true (not that I’ve had the chance to find out, unfortunately.)

We overlook that there are different kinds of stress. There’s emotional stress and physical stress. There’s stress from good things and from bad things. Obviously I would rather have stress from winning the lottery than from the death of a loved one, but my adrenals will suffer either way. They just can’t produce the necessary hormones to handle the stress.

I feel it if I don’t get enough sleep, if I walk too much, if my body is inflamed, or if I’m dealing with some other form of physical stress. When the stresses are both emotional and physical, it’s especially rough. That’s what happened earlier this month. Several friends and I threw a surprise party for a friend. The party planning was stressful. Then the night before, I slept horribly. Some of it was from worry over the party going well, but a lot of it was from pain, probably due to the rainstorm we had. I also had a friend staying with me for the weekend, since she came from out of state for the party. I was thrilled to have her visiting me! I love her, we’ve been friends for 30 years, and I wanted to hang out with her as much as possible. But I was also exhausted, and needed to rest.

It is so hard to balance my emotional and physical needs in a situation like this. Thankfully, I was surrounded by understanding people. I’m also very thankful for my current coping mechanisms. I used some stress-relieving techniques from my therapist. I took an extra dose of my adrenal medication. I used medical cannabis. I laid down for half an hour in the afternoon to just quietly breathe and relax my body. Between the physical rest and the emotional break plus the medications, I began to feel better. My friends didn’t expect me to do as much physical setup for the party, so I was able to sit more.

In the end, the guest of honor had a great time, we all had fun, and everything worked out well. But it was still nerve-wracking. I find it frustrating that even good things can be too much for me. I wonder if I get married some day, will I even be able to have the large wedding reception I’ve always wanted? Will I have the energy to dance at my own wedding? Probably not, and that saddens me so much. Of course, I am also single, so that’s a big hypothetical! Still, the point is, will the good things be so stressful for my body that I can’t enjoy them? Right now they often are. I just hope that won’t always be the case.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Advice between chronic illness folks

October 16, 2019

I don’t know about you, but it took me a looooong time to figure out how to handle flares. The truth is, I’m still learning. But over time, thankfully, I have found some things that help. Sometimes I take the learning process for granted; after all, I have had symptoms for almost 30 years now. A phone call a few nights ago changed that.

A friend was in the middle of a flare, and having a rough time. They were dealing with both the horrible physical symptoms as well as the emotional fallout of having to miss a much-anticipated event that night. There was also the all-too-common self-recrimination, wondering what they did to cause this. Maybe they should have done less the previous week when they felt so good. Maybe they should have rested more. Maybe maybe maybe.

I’m the queen of “what ifs” so I really get that. I do that to myself all the time, as much as I try not to. I’m getting better, but it’s still a struggle. This time, though, it was someone else who was struggling, so I was able to step outside of my own issues and help them.

My friend was only diagnosed last year, which really isn’t that long ago. It takes a long time to learn how to handle chronic illness. I wish I had had someone to guide me, but unfortunately, there was no one in my life at the time with that kind of experience. Now, I am glad I can be that person for others.

First, I talked my friend out of the emotional spiral. Sometimes our bodies are going to flare, and there’s nothing we can do about it. Maybe they did overdo it, but there was no way to know in advance. And maybe they didn’t overdo it, and there’s no way to know that, either. Maybe they could have done less last week, and they still would have had the flare, right? The weather was terrible; not only are we going through a seasonal change, but it was a very stormy day. There’s a good chance the weather was at fault more than anything, and what can anyone possibly do about that? Besides, once you’re in a flare, blaming yourself won’t help at all. And as much as we think we can figure out the cause and prevent the next flare, we can’t. Ok, sometimes we can, but to think we can do that every time is just unrealistic. That would imply there’s a way to prevent ever having a flare again, and we know that isn’t true. We only wish it were.

Once my friend was feeling a bit better emotionally, we talked about how to handle the current situation. I suggested some fun tv shows to watch, etc. But here’s where we get to the part I most want to share with you. Without thinking much of it, I mentioned some things I do that my friend thought was brilliant and it got me thinking, maybe not everyone does this? So let’s share our tips!

I know I will have more bad days. I don’t want them, but they are inevitable. So I prepare for them. Just like I have bandaids at home for the inevitable future cut or scrape, and acetaminophen for the inevitable future headache or fever, I also keep things around for future flares. Here’s a short list:

  • Fun, lighthearted movies saved on my Netflix and Amazon Prime accounts, plus a few old dvds.
  • Easy to watch tv series saved on Netflix and Amazon Prime.
  • Chocolate and other comfort food.
  • Frozen leftovers of healthy meals I have previously made.
  • Low-energy hobbies on hand. For me, this is currently knitting and crochet, which I enjoy on all but my worst days. I also like to read and listen to audiobooks when I feel up to it.

These work for me, but you will have your own items. On top of this, several years back I read a tip on Chronic Babe to make a list of things to do during a flare, since we can’t always remember these things when we’re dealing with tough symptoms. One problem I have found is that when I feel especially bad, I don’t even think to look at the list! So I recommended that my friend make a list, and tell several close friends and family members about it – anyone who they might talk to during a flare. That way, their friends and family can remind them to check their flare list, where they will find a list of things to do and ways to think.

My current list has fewer items like the ones above, which have become second nature at this point, and more items around my thought process, mostly recommended by my therapist. These help me to stop blaming myself or assuming things will get exponentially worse. I keep the list in the Google Keep app on my phone, so it’s always handy. Even if I don’t have the energy or am in too much pain to cross the room to my desk, I always have my phone on me. That’s key – keep your list where you can easily find it when you need it. Keeping it at the bottom of a heavy box on a high shelf is definitely not the most useful place for it!

It sucks, but we all know that we will have bad days, so we might as well prepare for them when we’re feeling ok. What do you to to prepare for the bad days? Do you have a flare list? What’s on it? Please share in the comments, because I’m certain you will have ideas that I and others haven’t thought of, and we all need to learn from each other!

8 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

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