Invisible Diseases Make It Hard To Prove Yourself

The week before last, I was productive, by my new standards, anyway.  I got something done every day, and made small steps in moving my life forward.  I’m trying to learn to measure progress in weeks, rather than days.  Note that I’m “trying”…I have not succeeded.

Then last week, after going to the doctor on Monday, I got nothing done the rest of the week.  This was a decision I made at the beginning of the week.  I would take the medication the doctor prescribed, and do my best to stay off my feet and rest per their instructions.

I’m not good at resting.  I kind of hate it, actually.  I like DOING things.

So it’s more than a little ironic that my list of “things wrong with me” all seem to be specially designed to stop me from doing things.

I Don’t WANNA Take A Nap

I struggled every day this week to feel like I wasn’t wasting my time if I wasn’t at least stressing out about something.  Anxiety tried to take over my brain many times throughout the week.  I had to keep talking myself down – reminding myself that healing WAS productive, and that someone who knows more than I do suggested that rest might be necessary for healing.

The thing is, I feel like I don’t do much anyway…so it seems like I’m “resting” all the time!  My body is so limited right now that my ability to be active and productive on any given day is negligible.  However, even when I’m doing nothing, I’m stressing out about all of the things I’m not doing, or all of the things I wish I was doing, or all of the things I used to do or can’t do or…

Yeah – the point is, I’m stressing out.  I am not “resting”…I’m simply not moving much.  I think relaxing and just letting myself off the hook seems…selfish.  Or maybe I just don’t really know how.  I can “actively relax”, in that I can meditate.  That’s a good thing.  Most of the time, though, if I’m not actively in control of my mind, it’s going bonkers!

I remember the days when I was able to be physically active from the time I got up until late into the night.  I would work long hours, and then play after work, and then fall into bed to get up the next day and do it all again. 

This wasn’t just for fun, or because I was young.  I was driven because I had to prove my worth.  I needed to prove I had value, at all times, in all things.  I needed to matter.

Gambling With My Health

At one point I was working as a manager at a new casino that was being built up in the mountains of Colorado.  Small stakes gambling had just been legalized in Colorado, and there were some big names from Vegas building little casinos in Black Hawk and Central City.  All of the casinos were western themed, and they were ALL new.  It was exciting, and demanding, and just my cup of tea.

When I was hired, the building had just been finished, and it was time to install the slot machines and game tables.  We worked 24 hours a day, 7 days a week, often sleeping for just a few hours on the floor of the casino or in my boss’s office.  If one of us went home during these work frenzied days, our director would accuse us of weakness.  I was the only woman doing this work, and I was NOT going to show any weakness to those hyenas.

So – there were times that I worked 36 to 48 hours without pause or rest, barely taking time to gulp down a burger or piece of stale pizza, or 72 hours with just a 4 hour “nap”.  The casino was paying for one motel room close by, and the guys would go in small groups and nap for a few hours and come back.  Being the only woman, I wasn’t comfortable napping with the guys, so I just didn’t use the room.  There were no extra rooms up in that area, and my apartment was an hour’s drive away.  My naps were usually on the floor in my boss’s office, or not at all.

How Sick Is Too Sick To Work?

During one of those long pushes, I pushed too hard.  I started feeling really sick at around hour 30, but kept working.  I got to the point of vomiting, so I would run to the bathroom, or out into the alley, vomit, and then go back to work.  I didn’t tell anyone until I just couldn’t push myself another inch. After 5 or 6 more hours of working and vomiting, it finally became clear to me that I couldn’t keep going.

So I told my boss that I was sick.  He shrugged and said “you gotta do what you gotta do”.  I didn’t know what that meant – did that mean I “gotta” keep working?  But…I couldn’t.  I literally couldn’t keep working, but I felt guilty as hell for leaving.

I decided to drive home at about 2 a.m., down out of the mountains, through Clear Creak Canyon (not the best road in the daytime, but kind of hellish at night).  I kept having to pull my car over to puke by the side of the road.  I made it home, although I have no idea HOW.  I spent a few more hours vomiting before I realized something pretty serious was going on, and ended up in the ER, and then hospitalized for 3 days due to exhaustion and dehydration.

Still Not Good Enough

My need to prove myself had literally put me in the hospital.  It wasn’t pretty, and it obviously wasn’t healthy, but all I could think about was getting back to work.  I needed to work to be worth something, and any time spent NOT working was wasted, in my book.

THOSE times are the metric by which I measure my current reality.  Even if I get something done, even a lot done, on any given day, if I can’t go at full speed for the entire day, it still feels like a failure.  Which means that no matter how much wisdom I gain, I have had a feeling of failure, every day for the last 20 or more years.  My body just can’t do what my mind wants it to do, and I can’t contribute the way I want to contribute.

So, in my mind, I am always fighting my own opinion that I am a failure.  That I have no worth and no value.  I am just “sitting around doing nothing”, and that is about the worst thing I can do.

For a long time, I have defined my worth by how much I could DO and how much I could take…how much pain could I ignore, how long could I torture my body before IT won and I had to give in.  My body kept signalling, louder and louder, but I kept thinking that the best thing to do was push through pain and fatigue, keep GOING.  

I saw my value only in what I could accomplish, and whether I could do more or do it better than anyone else around me.  I sought out jobs in industries that required that, and that were predominantly male, just to up the ante on the need to PROVE I had worth and value.

Now THAT Is Ironic

So it is a cruel twist of fate that I am disabled, now.  I read a meme recently that said something to the effect “I’m such a bad ass that it took ME to defeat me.”  Depression and anxiety are definitely one form of defeating myself.  In addition, almost all of my physical issues are autoimmune in origin, from fibro to allergies to arthritis, these are all some form of my body attacking itself.  In addition to “me attacking me” ailments, they are all invisible.

Sure, doctor’s can see arthritis, and I have some “real” diagnoses.  But most of what ails me is invisible.  You can’t test for depression, or anxiety – I have to trust myself that those things are even real, and not just me “making things up” to make excuses for how I’m feeling.  Fibromyalgia is a disease that is diagnosed from a list of symptoms.  Not only do I have to struggle with believing myself, but I have to struggle with SO many people having SO many opinions about the reality of what ails me.

Illness That I Can’t PROVE

It might seem weird to some, but I get almost giddy with happiness when I get hurt in a way I can prove.  When I get cut or stung or ANYTHING that leaves a mark, all I want to do is SHOW everyone.  It is a relief, in an odd way – because I went and got sick with not just ONE thing that I can’t prove – but a whole list of problems that I can’t prove.

I find myself describing how I feel to my daughter, trying to make sure she understands that I would be DOING something if I could.  She assures me she knows – she has watched over the years, and knows that the moment I have any energy at all, or any kind of release from pain, I am up and doing.  I never know how long it will last, so I take advantage of every moment that I can.

Sometimes I have some wisdom and patience and understanding for myself.  Most days, though, my situation just pisses me off.  I blame myself for it – after all, it is ME attacking ME.  I also know, when I’m thinking straight, that all of these things may have happened anyway.  

This is one of the pissed off days.  I just want to DO things, yet my body has other plans, and pain and fatigue are winning yet again.  So – do I take the medications the doctor prescribed, and do some more resting?  Or do I push through, deal with the pain, and try to get something done?  I honestly don’t know the right answer.  You’d think, after all this time, I would have this figured out…but I still don’t.


  • I feel ya.

    I was diagnosed with depression and severe anxiety at the age of 10. TEN. My parents, however, ignored it because I was “just being fucking dramatic” and it was all BS. That “BS” didn’t stop me from two suicide attempts as teenager, however. I’ve always struggled with medicating myself like I ought to because A)medication can be fucking expensive. D: and B) what if I am “just being dramatic” ? Isn’t that the same as being kind of a selfish asshole?

    I’ve also had issues with my feet almost my entire life. They were also chalked up to “well you’re just doing it for attention” or “you’re just being dramatic”. It wasn’t until my 20s that a podiatrist told me I really shouldn’t be in the types of jobs where I’m on my feet all day because my feet are so fucked up. Well, when that’s all you’re qualified to do, what are you supposed to do? It was around the same time that I got told not to stand on my feet all day that I started having more frequent joint and muscle pain. I just sort of toughed my way through it though because I didn’t think a doctor could really do anything for me. The last couple of years though, it got worse. It got worse to the point that I wondered if I was going to end up seriously crippled by the time I was 45-50 because I would come home from work in such pain every day. Like, I would come home and my arm and shoulder would hurt SO much I couldn’t lift it (from repetitive scooping all day long as part of my job). I would come home and be so exhausted from the pain that I’d pass out for two hours.

    Last November, I got a new doctor because we got new insurance that fall. He did blood work (after I told him wtf was up with my stupid musculoskeletor issues) and it turns out (after some wrangling with his NP who told me the wrong thing initially) that I have fibromyalgia and my thyroid is severely out of whack (which I sort of knew because I’d been diagnosed with low thyroid before but initially the NP told me my thyroid was fine and then the doctor looked at it and said it was way fucked up). So between my 4 different daily medications and the sleeping pills I sort of borrowed from my husband (who thinks sleeping pills are for sissies), I’m mostly doing OK right now.

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