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!

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Reminded that my body can feel good

July 12, 2019

It’s not that I intentionally try to think of my body in negative ways, it just happens. My day is focused on which pills to take, how to moderate my activity enough to not cause fatigue, but so much that I don’t get enough exercise, how to sit and stand to lesson musculoskeletal pain, and being super careful about my diet. That’s before I research symptoms, diagnoses, and treatments. I am frequently aware of aches and pains, fatigue, nausea, and other symptoms. I don’t look for problems with my body, but I think about them constantly anyway.

And then this week I was aware of good sensations, and it made me realize just how much I think about the bad stuff. The good stuff came in two forms. First, there was physical therapy. That often makes me feel good, and I appreciate it every time. Still, it doesn’t make me aware of the juxtaposition as much as I was this week. The other thing that happened was that I had sex. I hadn’t had sex in a while, and when I did, it was just a fun night with a former boyfriend who I fool around with whenever he’s in town. This time, he was in town for a week, and while we didn’t have sex every day, we still had quite a good time. He’s very understanding about my health issues. One night he was in the mood and I didn’t feel up to it. No big deal. Another night, I felt really sick, and he simply held my hand until I felt well enough to go to sleep. He knows what will hurt me and avoids those things. Having that level of trust and understanding makes all the difference for me. It allows me to simply enjoy myself.

Now let’s face it, even healthy people often feel more positively aware of their bodies after good sex, so that isn’t unusual. It’s just that I became aware of the fact that the good feelings were displacing the bad ones. In the afterglow of a particularly good orgasm, I was too focused on the good feelings to notice any pain or fatigue. I knew those would likely hit me later, but for a while, they were held at bay. This wasn’t new. In fact, there were a few times when I was dating this same guy that I specifically said I wanted to have sex because I was in a ton of pain and I knew sex would help, thanks to the lovely brain chemicals that are released. Unfortunately, my dating life is pretty much nonexistent, so that hasn’t been an option for me lately.

When I went back to physical therapy at the end of the week, I paid more attention to how good I felt afterwards. She had spent a particularly long time working on my knees, and I noticed how different they felt now that they were full extended (something that doesn’t yet happen without her assistance.) I felt the lack of knots in my neck. My body was relaxed and, while not pain-free, definitely pain-lite.

Most days I won’t be at physical therapy or enjoying sex, and I won’t have those moments with few symptoms. But this was a good reminder that when I do occasionally notice my body feeling good, I need to revel in it. For as long as it lasts, feeling good is important, and something worth savoring.


I don’t know what to hope for

March 21, 2019

I read a lot of stories about patients improving to the point of their symptoms going into remission and even being able to take a jog or get a job. Of course, I also read stories about those who get much worse are are unable to care for themselves. Right now I fall somewhere in the middle, and I very much want the former but worry about the latter.

It’s hard to be involved in the chronic illness community and not hear these stories, I suppose. I read blogs and follow various Facebook groups. I imagine I would see a lot more if I was on Instagram on Twitter, but that’s more than I can manage right now. So often I worry about getting permanently sicker. It’s one of my biggest fears. But every now and then, I wonder, could I get better?

Now I’m not fooling myself. I will never job – my knees are permanently unable to support jogging. I can’t imagine how my symptoms would ever go fully into remission. But what if I could still get significantly better? Is that even possible?

When you sprain an ankle, your expected outcome is to completely heal. When you get a cold, your expected outcome is to completely recover. But when you have chronic illness, there simply is no “expected outcome.” I read stories by thyroid patients whose symptoms went into remission, but they usually caught it early on and immediately treated it properly. I did not. I read stories about folks with adrenal insufficiency who recovered completely, but they usually caught it early on and were able to remove the offending stressor. I did not catch it early on and my stressor is my chronic illnesses, which will never go away. So what is realistic for me?

There are no answers. I know that. But that doesn’t make it easy to wander through this maze of diagnoses, doctor appointments, and tests, constantly striving for better health but not knowing what to aim for. On a scale of 1-10, the year after I started this blog I was probably at a 3. Now I’m probably at a 5 or 6. I know I will never be at a 10, or even a 9. But is an 8 possible? Is a 7 possible? Already I wonder if I have reached my maximum possible health. But at the same time, I keep trying.

I keep trying because I see the possibility. I have given up many times over the years. I stopped trying to get better because I didn’t know what else to try. Now I have a list of things to try. I don’t know if any can help, and some may even hurt, but how can I not at least try? Some are obvious, like my upcoming infusion (yes, I’m doing it) for anemia and low ferritin. Increasing my pregnenolone makes sense, because blood tests show it’s low, and it’s necessary for progesterone and cortisol production. But should I take Cortef to treat my adrenal insufficiency? Or maybe my fatigue isn’t from adrenal problems at this point but from something else? I continue to find and elimination sources of corn in my diet, most recently realizing that my calcium and vitamin C supplements contain corn. I stopped those a couple of weeks ago and already feel much better. Maybe there’s more corn sneaking into my diet? I have no idea how careful I need to be and don’t want to go overboard, but eliminating corn seems to help. I want to try LDN (low dose naltraxone) which some patients report has helped with their autoimmune disease.

There are more specialists I want to see, supplements I want to try, dietary changes I am considering. Each of these takes ages, and can easily be derailed. I was going to try increasing my pregnenolone this week, but then I found out my compound thyroid was made as a slow-release version, which no one told me (and the doctor didn’t order!) and that explains some of my current problems. I am going to start the correct version of the medication in a few days, and by the time I have adjusted to that, it will be time for my iron infusion. I will need to wait a few weeks after that to see how I’m feeling and if I need a second infusion before I consider other changes.

Any time I make a change, I wait for weeks, sometimes months, to make sure I still feel ok. And so often, some other symptom or reaction gets in the way and I need to delay my plans. That means it will probably take me 2+ years to get through my current list of 9 things I want to try.

It would be so much easier to give up. I’m in a pretty good place, and maybe I should just be happy with where I’m at. But then I think about having to miss my very close friend’s surprise party last weekend because I didn’t feel up to going. And I think about the pain several days ago that was so bad, I had trouble functioning. And I think about those days that the fatigue wears me down unexpectedly. And I think about what happens if one day I want to get married, and I can’t even have the kind of wedding I want because I won’t have the energy for it. And I think about how much I want to spend the entire day with my nieces and nephews but I don’t have the energy for it.

And then I decide to try again. Because maybe I won’t get any better than where I’m at right now. Maybe this is as good as it gets. But maybe it isn’t. Maybe I can nudge my way up to a 6.5 on that scale, and wouldn’t that be worth all of the effort?


I wish I could stop my fake smile

July 21, 2018

Even at 12 years old, I knew not to milk my situation. If I exaggerated the pain I was in, cried unnecessarily, or complained too much, it would come back to bite me in the butt later. I was right, of course. Even without all of the theatrics, some doctors and teachers suggested my pain wasn’t real, that I was just trying to get attention. Assholes. The thing is, this idea that I shouldn’t exaggerate anything boomeranged, and soon I was pretending I was ok even when I wasn’t.

Sometimes that’s a good thing. For me, faking it until I make it can help. And I hate having people constantly ask me what’s wrong, so looking like nothing is wrong can help to prevent that.

But then, sometimes it’s not so good.

Today a friend stopped by unexpectedly. I was NOT in a good place. I’ll probably right about that another time, but basically, I’m in rough shape. The pain has been worse lately, and it’s spreading to more parts of my body for some unknown reason. I’m worried about the future. I might have to move out of the apartment that I love. I’m frustrated and overwhelmed and, mostly, very scared.

I started to talk about some of this with my friend. I could feel the start of tears in my eyes. But I didn’t want to get too far down the rabbit hole. If I tried to explain everything, it would just lead me to focus more on the thing I’m trying to get off my mind for a while. So I said I needed to stop talking about it. And a second later we had changed the subject and I found myself smiling.

Now don’t get me wrong, smiling is a good thing, especially when you’re happy. But I wasn’t happy. I was smiling because I am used to plastering that smile on my face, even when I don’t want to. It’s what made the LTD and SSDI trials so hard: I was supposed to let them see how I really felt, and I didn’t know how to do that anymore. After so many years of fake smiles, how could I stop?

Before my friend showed up, I was definitely not smiling. I wasn’t smiling after he left, either. But with him here, I smiled. I thought to myself, “I should stop smiling. He knows I’m scared and in pain and he’ll be here for me. I want to stop.” But I couldn’t.

When my grandmother died just a few years ago, I cried during the funeral. Later, at the shiva (a Jewish tradition where friends and family gather to console the bereaved) I found myself smiling a lot. One relative I didn’t know very well even commented on how great it was that I could focus on the good parts of my grandmother’s life and remain so cheerful. Little did he know. I wasn’t cheerful. It was an act. I was smiling, I had a bounce in my voice, and I was miserable.

My fake smile was helpful today at the grocery store. I looked and acted normal, so no one asked any questions. But with my family and friends, sometimes I want to stop smiling.

If only I knew how.


Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

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I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.


The stress of dealing with stress

March 12, 2018

When the doctor told me I needed to avoid stress because of my autoimmune disease, I laughed to myself. If it was that easy, wouldn’t everyone do it?

But over the years I learned how to stress out less. I’m still Type A. I’m still controlling, But I managed it. I get stressed out in more reasonable ways. It doesn’t feel as extreme as it used to, or last very long. I almost never lose sleep.

Until this month.

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The last few weeks have been really rough. I have been struggling a lot. And finally yesterday, I just felt so frustrated by it all. I wasn’t sure what to do. I called a friend who also has chronic illness, because I felt stuck. I wanted to stay home and rest and be alone. But I had already done that several times in the last week and it didn’t help. So was it fair to cancel plans with a new friend?

She helped me realize that I did need to stay home and take care of myself. And that while spending a day watching tv and crocheting will help me when I’m physically exhausted, it’s not enough for my current anxiety and stress. Emotional issues require a different approach.

She suggested a journaling exercise: write for 10 minutes without stopping. Make it a stream-of-consciousness writing exercise, and do it for 4 days. The key is not to write about *what* is causing me stress but to write about *how* it makes me feel. That’s harder. I’m not good at that.

But the minute we hung up the phone, I set my timing and got started.

Within a few minutes I was crying. It was wonderful! You see, my problem is that I have gotten so good at compartmentalizing my feelings when I need to, that I’m doing it even when I shouldn’t. Like right now. For the past week I have felt like I needed to cry, but I couldn’t. I knew it would help me feel better, but I couldn’t do it. I tried cutting onions. I shed some tears, but it wasn’t a real cry. I watched a sad movie. Again, I shed tears, but it wasn’t the sobfest that I really needed. It wasn’t enough.

But the journaling exercise got me to cry. Then I got in the shower and cried more. Seriously cried. It didn’t last long, but I had tears streaming down my face and snot running out of my nose and it felt good. Cleansing.

I need to cry more. Maybe today’s journaling will help. Maybe not. But it’s worth a try.

We’re taught not to cry. Crying is bad. Not crying shows strength. I am proud of the fact that I almost never cry. I feel embarrassed when I do cry. But why? It’s a natural expression of emotions. What’s wrong with that?

My health issues also bring up a lot of negative feelings. I usually deal with them by setting them aside while they’re raw, then dealing with them a bit later when they aren’t quite as strong. That works for me.

The problem is that it stopped working. At least in this case. A few weeks ago my girlfriend and I broke up. We weren’t together long, which was part of the problem: it made me feel like I didn’t have the right to be upset. But I was. This relationship was different. I thought it would last a long time. So did she. The breakup itself isn’t the point of the story, though; the point is that I didn’t mourn. We broke up at night, and I called my mom and cried. The next day I had a medical appointment in the morning. On the drive there I wanted to cry but I stopped myself, because I didn’t want to be an emotional wreck during the appointment. I didn’t want to be distracted. By the time I got home, I was too tired to deal with my emotions. The next day I had another appointment. Again, in the car I almost cried, but I stopped myself.

And then that was it. I never really cried. I just went on with my life. I didn’t talk about it much with friends. What was the point? The breakup was no one’s fault. I wasn’t mad at her. I missed her, but talking wouldn’t help, right? The thing is, pushing aside my feelings just meant that I felt fine at the time, and now it’s caught up with me. Now I’m stressed out and anxious.

But it took yesterday for me to figure that out. I thought I was stressed about other things. I knew my response to them was way out of proportion, though. I wasn’t sleeping well. I was anxious a lot. I was overwhelmed. I was yelling at people. What was wrong with me?

What was wrong was that I wasn’t dealing with things. I was pushing them aside.

And as if that wasn’t enough, I have autoimmune disease. Thankfully, I didn’t get sick! But it was definitely a strain on my adrenals, and I had to increase the dose of adrenal supplement that I was trying to decrease. There has definitely been a physical toll.

I have a pretty good handle, all things considered, on managing my physical symptoms. I have had decades to figure that out. But when it comes to emotions, I have to unlearn years of bad habits. I have to learn how to stop hiding from my feelings and to let myself feel them. I have to ignore the daily messaging from society that says crying is bad, being sad is bad. It’s ok to not be the happy, cheerful poster-lady of chronic illness. It’s ok to be sad, stressed, anxious, or whatever else. I just have to stop hiding from it.

So that’s my lesson for this week. It’s taken me far too long to learn it. Before long I’m sure I’ll be learning some other lesson. But for now I am focusing on this one. Because I’m still sad, and I’m still learning.

Now it’s time to go do my stream-of-consciousness journaling again. Hopefully I’ll cry.


Wanting and despising pity

February 17, 2018

I’ve been off my feet for the last week, more or less. Some days I could barely hobble around my apartment, even with crutches or a cane. Other days I could walk around the apartment fine, but putting on shoes was incredibly painful. This doesn’t happen often, but it’s happened many times over the last 13 years.

The difference is that this time, there are new people in my life who aren’t familiar with it.

More than once, a neighbor, a friend, and my new girlfriend all noticed me using crutches or limping, and they offered sympathy. Some were clearly pitying me as well.

Most days I despise pity. Instead of pity, I wish people would offer sympathy. And I wish they would do things to help. Hold open a door. Don’t come near me when they’re sick. Call their legislators and ask them to vote against the new bill that guts the Americans with Disabilities Act (ADA). (Seriously, call them! The bill is described here and you can find your senator’s contact info here.) Those things are helpful. But not pity. Pity sucks, and it’s dehumanizing. It means they’re seeing me as a set of symptoms instead of as a whole person.

And let’s be honest, we are taught by society that we shouldn’t like pity. We should be strong and resilient, blah blah blah.

But some days, that’s just how I feel. Some days, life sucks and I want more than sympathy, I want pity! Like when my feet hurt so badly I can barely hobble to the bathroom. Like when the pain is so bad, I can’t even wear socks. Like when I have to cancel plans so that I can stay home and feel like crap. Sympathy is good. Usually that’s enough. But every now and then, when I’m feeling especially sorry for myself, I also want pity from others.

Now here’s the thing: I talk to people about being in pain. Because I’m in pain. Every day. It’s a part of my life. I don’t dwell on it, and I only complain on the worse days, but I mention it a lot. And sometimes, people offer pity, even though that’s not at all what I’m looking for. And I hate it.

Then again, sometimes I bring it up because I DO want some sort of acknowledgement. I hate to admit it, but it’s true. Sometimes, I want people to know I’m in pain, to feel bad about it, to offer me some sympathy, and maybe to offer help with something I struggle with.

It’s a hard line to toe. I want to be able to say that I never want to mention it, I want it to be ignored, I want to be treated like everyone else. I want to say that, but it’s not true. Because the truth is, I’m human. And sometimes we humans want a little sympathy and support. Some days we even want pity!

Like I said before, society tells us we shouldn’t want pity. We should be strong and inspirational. Others should be able to point to us and say, “Look how amazing she is! If she can do what she does despite her health problems, I have no reason to complain.” Talk about dehumanizing! I’m a real person. I’m a whole person. I laugh and cry, feel optimistic and pessimistic, go out with friends and stay home feeling sick, do laundry and errands and cooking and other mundane chores. I’m more than a set of symptoms. I have feelings.

And yes, sometimes those feelings lead me to wanting pity.

I’m not proud of that, but I’m not going to be ashamed of it anymore, either.

I don’t live in the land of pity. I know that would not be healthy for me. But if a few days here and there I feel this way, what’s so wrong with that? I can’t compel someone to pity me. More than that, I know I’d be pissed if a bunch of people started doing it. But if for a few days I’d like my mother or a friend to pity me a bit, to offer condolences for what I’m dealing with, then so be it!

I won’t ask for pity. And most days I will still despise it. But if every now and then I want it, that’s ok.

Is it just me? Do you ever feel this way? Do you feel guilty for wanting pity? How do you handle it? Please share in the comments!


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