Being Disabled is an Emotional Rollercoaster
Can we get real for a bit? Can we talk about all of the stops on the emotional journey that is being disabled? And how they loop around and around and a round?
Let’s talk first about what has triggered this long post:
What about the people who are sick and are suffering, but go out of their way to make it seem like they’re as sick (or have been for as long) as you when they actually aren’t?
Look. If you’re not, or have never been, as sick as I am/have been that’s a good thing. That’s not something I think badly of people for - I hope that’s obvious.
Also if you’re sicker than I am or have been sick longer I’m not gonna be weirdly jealous.
What I do have a problem with though is people who work to equate their suffering with yours when in fact it’s not the case. People who do so not in a supportive ‘I get it’ way but people who basically want attention.
If you’re sick I’m gonna give you the attention, support, and accommodations that you need and deserve. I guess not everyone is like that but when you’re in a group of or talking to another chronically ill/disabled person who’s dealt with all the things that we deal with (especially those of us with invisible illnesses and disabilities) you do NOT need to exaggerate.
That leads to some real bull shit.
I thought a girl was as sick as I was. In hindsight it was because she wanted me to think that. She went out of her way to make it so. It wasn’t that she tried to dramatize it to the correct level of how normal people would respond to a situation, by which I mean it wasn’t that she was desensitized to the crap she was dealing with and over corrected when trying to paint an accurate picture. It ended up being that she was unable to not be the center of attention. I keep having to learn that just because someone has been or is going through something awful, that doesn’t mean they are nice people.
If someone is sicker than you, you don’t need to one-up them. Just like if someone is worse off financially than you, or with any other hardship. You just don’t have to do it. In fact it should be avoided. Here’s why.
I was using this girl as a measuring stick. She started to work some (probably too quickly based on her health because she started also having financial issues). I thought ‘Gosh. Should I be pushing myself harder?!’ I didn’t think that there was any way that even if I was in as desperate a situation as her that I could be doing what she was doing - at least with the stamina that she was. I thought that maybe she was just stronger than I was.
That was a mistake. What I should have done was instead of going to a self blaming place do one of two things:
1. Realize that since I wasn’t as desperate maybe I didn’t have the adrenaline and such that she did. (I did somewhat realize this)
2. Allow myself to believe that, no really I couldn’t do that, but not because I wasn’t strong or because I lacked will power, but instead because I WAS SICKER.
Listen. There are a lot of variables in our lives, even among people with illnesses/disabilities and even those of us with the “same” illnesses/disabilities. One of the hardest things for us to shake in life is comparing ourselves to one another. But I truly believe that it is one of the most necessary things that those of us with chronic illnesses/disabilities (particularly invisible ones) have to do.
We are the last people who need to be hard on ourselves. We are the last people who need to put that sort of pressure on ourselves, or hold ourselves to such a high standard. Standards that are often unreasonable for able-bodied people.
As someone who has always had some illnesses (though I didn’t know it for a long time) but hasn’t always been disabled, this has been a journey. It took years after I became bedridden for me to even realize that I was disabled and that it was ok to use that term. Thinking that I would soon be better (it’s been ten years, never thought that it would be this long) it took years more to believe that I could use things created for disabled people. In part because I always thought I’d get better “soon” but in part because I thought I’d get better period, and not everyone would.
If you need a cane/wheelchair/whatever use one. If you don’t “need” (a word I have a complicated relationship with) it but it would still help or even might help, try it. If you need a handicap seat more than your average member of the public - you’re who they’re made for. If you need to ask to sit to the side of the merch line at a concert until you’ve waited an equal amount of time as others because you can’t/shouldn’t stand up that long - do it.
I myself have a hard time practicing what I preach with this. I often don’t do this. But damn it I always regret it. Ten years ago I never thought I’d still be sick now. Wouldn’t have dreamed it. But I look back and see all the times these things would have come in handy. For me this is complicated by the fact that I have a not-so-chronic chronic illness (on top of other truly chronic ones) that I will one day get better from. I always thought - or hoped- that I was right at the edge of getting “well” - or as close to it as I’ll get. I though it would be silly to buy a cane or a self pushing wheel chair to just use for a couple of months. Flash forward and it’s been ten years.
DO NOT COMPARE YOURSELF TO ABLE BODIED OR OTHER DISABLED PEOPLE
Just as others can’t tell what’s going on within you, you can’t tell what’s going on within others. Especially if your ideas of a healthy amount of pushing yourself have been skewed. For me they were skewed by the first eleven years of my life when I thought I was healthy, and further skewed by years of having to push, far too hard, to my own detriment in order to do literally anything.
Take a shower? Recover for 24 hours.
Brush my hair? 30 mins of increased fatigue.
Go to the mall with friends? A week full of seizures.
Yes I sometimes went out with friends. From a health perspective I shouldn’t have, from a mental health of a fourteen year old perspective I had to.
The friends who (thankfully) stuck around (or more so entered my life) when I got sick didn’t see how when I went home I couldn’t even shower let alone make myself a sandwich or attempt to do school work. They didn’t know that the day I spent with them was my entire week’s worth of activity.
I look back to that time in my life and I don’t know how I did it. If you asked me to do all that now, even with me being so much healthier, I couldn’t. In fact I wouldn’t even try. I would sometimes go to a friends house for a sleepover, go to church with them the next day, then the mall for literally six hours, and then a sex ed class that night. I went home and was bedridden the entirety of the rest of the week. Other than going to the bathroom, meeting with my homebound teacher, and occasionally going to another room to sit: that was it.
I also hate how sometimes I think I’m not allowed to say that I was bedridden because most of the time I technically could walk.
But FFS I was bedridden enough to say that I was bedridden.
Same with being homebound now. I use homebound now because most nights I can make myself a grilled cheese. I sometimes do leave the house. I sometimes even leave for things other than health appointments. But when I do it’s usually after an appointment and I pay for it for the next few days. When I am lucky enough to get out just for the fun of it I often think “So can I not say I’m homebound now?”
I’m not attached to the label because I want pity or attention. Although I will be honest and say that since I’ve not been taken seriously by the vast majority of people, and since most people that I trusted dropped off the face of the Earth when I got sick, I do sometimes wish I got a little more pity. Because when you’ve hurt as much as I have, for as long as I have, and you’re this isolated. It’s nice to have someone recognize that you are one strong MOFO. Usually though only people who have been through similar things will do that. Which is why it’s even more important that we don’t exaggerate our own issues to each other.
It’s also important that we are aware of who we are talking to and what they’ve been through/are going through. You should absolutely not complain to someone who had to leave school entirely in the sixth grade (and still hasn’t been back, even though they’d have graduated college by now) about not being able to make it to school every day this week. It’s one thing to do that a couple of times in the heat of the moment, it’s another thing to lack enough empathy to do that constantly. In the same way that you wouldn’t have a right to complain to an amputee that you broke your arm. Or that your hairline is receeding to someone who’s lost their hair completely.
I’m attached to labels for a similar reason that I enjoy finding out more of my diagnosis's. I enjoy find out more diagnosis’s because well, I’ve already got the damn thing, so it’s better to have a name for it so I can try to figure out how to fix it. When I have a word to use - like ‘homebound’ or ‘bedridden’ or ‘disabled’ it helps me validate my experiences, my hardships. Not just to others but to myself.
Recently I was diagnosed with Tethered Cord. Now this is something that they usually find in children, but they are finding more and more in adults. It’s something that they should have probably checked me for when I was eighteen months old. But instead I got very sick. I got sick with late stage neuro lyme. I got sick with many other things too. But at the same time that my lyme got really bad and I “crashed” my TC did too, probably because I was going through puberty and growing taller. I was told by many doctors that I was faking before I got any diagnosis at all. One of the nastiest was a neurologist. Sometime I think I might right him a letter. Let him now just how bad he effed up, and how much easier my life would have been had I had my TC fixed then. I would have healed faster (because I was younger), I wouldn’t have had so much nerve damage, and most importantly I wouldn’t have suffered so much for so long. I still would have had my other illnesses but the things that we’d written off as my lyme that were actually TC would have been fixed ten years earlier.
Anyway. I had an inkling that something else was wrong with me, since I was about to hit the ten year mark of lyme treatment. I pushed for a neuro work up. I asked about chiari because I’d read that they had changed the diagnostic guidelines. I didn’t have chiari, but I did have CCI and TC which together cause something very similar. Getting checked thoroughly for chiari by an EDS knowledgable neuro surgeon though got us looking into TC. He said that I should get checked out for it. I got my lumbar MRI and got lucky that my tethering showed up clearly on the imaging. We discussed it but he said that since I just had ‘some minor nerve stuff in my feet and very rare incontinence’ that he wouldn’t do surgery. I was surprised. I explained that I knew that it often didn’t cause all the symptoms I was having but that if there was even a chance it could make me feel better with all that I had going on, that I wanted to do it. He said ‘what all do you have going on?’
It was then that I realized that in my effort to give him the most clear cut symptoms of TC that I have, I forgot to give him a good picture of what my life is actually like. As soon as I said that I have been mostly bedridden or homebound for ten years he said we’ll do the surgery. But my being mostly bedridden/homebound has been going on so long that I didn’t even mention it. I didn’t even mention it. I don’t mention a lot of things. I’m sure people who are friends with me on facebook think I never shut up about my illnesses. But if they really truly realized that this is my life -literally constantly- I bet they’d change their tune. They don’t realize that when they stopped asking how I was (most, very quickly I might add) that didn’t mean I got better. My symptoms don’t stop just because I don’t mention them. It’s rare for me to mention symptoms at all, even to those I live with unless they’re worse or new, so that we can track them. In the grand scheme of things I almost never mention this crap. Not anymore than I have to. I’m a real trooper. Sometimes I forget to let myself believe that. Most people will never truly understand this, and I think that’s probably a good thing. Because it takes going through this to get it. If any of the kids I went to school with woke up with my daily symptoms, even with me being so much better than I was, they’d call 911 and think that they were dying. They’d insist are morphine and narcotics. They couldn’t do it.
I’m not glad that I have tethered cord. I am glad however that I’ve figured it out, that I pushed for another work up, that I wrote off that mean neurologist from when I was eleven, that we didn’t listen to any of the other nasty doctors who didn’t believe me, that we got to good ones who listen, and that this surgery may really help. And although it hurt bad at the time (or rather when I was back with it enough to realize it had happened) I’m glad the people that let me down got out of my life. It’s allowed me to realize that no one else’s opinions really matter when it comes to this sort of thing, because no one else is in my body. I had my mom, a couple of new/better friends (shout out to Emma and Lana) and really, that’s all you need. You’re much better off with then than with people doubting your pain.
Getting a diagnosis that is such a clear cut “oh wow” sort of thing, something that I need literal spinal surgery for has been interesting. I am no sicker now that I have this diagnosis. But to have something that, although many doctors don’t realize how serious it can be, your average person would be in an odd way impressed by has been sort of healing. I like knowing that I’ve got an even scarier seeming something going on. Lyme isn’t taken seriously. Not by the vast majority of doctors, and not by the vast majority of the public. They don’t know all that it can do. They don’t know how common it is. They don’t know that it’s everywhere. They don’t know that it’s similar to syphilis. That it bores down into your muscle and bone. That it gets into literally every part of your body. That it causes your blood to get too thick. Your brain to swell. Your heart to not work correctly. Your immune system to basically shut down. But when I say that my spinal cord is tied to my spinal column, that it’s pulling on my brain, people are much more likely to have an appropriate and proportionate response. I’ve always been this sick though. I was born with all of these issues. Nothing changed other than me being lucky enough to figure out another big piece.
I hate that this helps me. I hate that I still give a rat’s ass about what others think. I don’t in the traditional sense, at least not most of the time. I’m now older, wiser, stronger, more self assured. I now know because of how many times that it’s happened that if a doctor doesn’t think I have something wrong with me, and I do think so, that the doctor is almost definitely wrong. I have now had the experience of a doctor telling me that I was fine even though I knew that my organs were literally falling out of my body. Go to a different doctor and sure enough not one not two but four organs were prolapsed. I knew that before it was confirmed though. I know that I’m sick and I suffer. But after years of very few people treating you with the amount of respect you deserve for getting through the piles and piles of shit I dredge through all day every day, you start to doubt. After years of doctors saying I was faking I started wondering if they were right. But that didn’t make them correct. That didn’t make it true. And it didn’t make their behavior acceptable. All this going on so long that I’ve lived equal parts of my life before and after I crashed, this becoming my ‘normal’ doesn’t not make me healthy. It doesn’t mean that I’m normal. It doesn’t mean that now it’s ok to judge myself based off of societies standards.
Yes I had to leave school in the sixth grade. Yes I had to leave homebound in the eleventh. No I still don’t have my GED. Or drive. Nor have I been on a date, or been kissed, or stayed overnight without another adult present.
Yeah. Cuz I’m disabled. And that sucks. But that’s ok. It’s dealing with the illnesses and disabilities that suck, not me.
