Living with invisible disabilities (Newly updated)

I thought it was time to update this. thought I'd talk about some of my issues, the mental and the physical, what I go through on a daily basis, and the stigma around them.
For this post I will start off with part one, mental. 
If you are going to read this, do not skim it or skip parts. Reading the whole thing would really mean a lot to me.
There are no trigger warnings for this first section of writing.

One of the hardest things I go through on a daily basis, in terms of "mental" issues, and something that I have had since birth, is a severe learning disability known as Sensorimotor Integration. This disability is on the Autism spectrum, though I only found out about that aspect more recently in my life. 
Basically what it means is that I process information differently than most, and a lot slower. In order to learn new things it takes me longer, I usually have to be shown how to do it, told how to do it, and have it repeated multiple times before I understand it, and even then, there are some things I will never understand, which brings me to my next point. Math. Math is something that I have great difficulty with. It has always been so, and always will be. This isn't like trying to learn how to ride a bike, where if you practice, you will get better. My ability to do math is at approximately a grade 4 level, and it always will be. Despite how many people tell me that I can simply practice and I will get better, that it will improve, it won't. That's all there is to it.
Another issue that I face in terms of my learning disability is not being able to pick up on things. This includes things like social cues, and other subtle things. I can't always tell if someone is joking, I might not understand what someone means, where as other people can pick up on these things easily, which is why it is always best to be blunt with me. Trust me when I say that this is very frustrating. And it's stuff that most other people can EASILY understand. This has made making and keeping friends rather difficult in life in many ways.
My disability also affects my ability to write things as legibly as other people.

Here is some of the stigma and frustration centered around the above.
I often get labeled as stupid. Lazy. Trying to get and maintain jobs is difficult because I am a slow learner, and get labeled as such. I have been let go from jobs or even not payed because I was too slow. Now I can say that I am slow, and I don't mean stupid, I mean slow. I know what my strengths and weaknesses are, and in saying so, I am not putting myself down. I'm simply stating a fact. So when I say that I am slow (to learn and catch on to things), don't tell me I'm not, or to not be so hard on myself. I say this not only because it is true, but because it is something that people need to be aware of when working with me, being friends with me etc.
Another thing that becomes really annoying is people telling me that there is no such thing as learning disabilities. This is often followed with a, everyone just learns differently, or in their own way. We all learn uniquely. Well, I gotta call bs on that. Complete and utter bs. Not only is there extensive research to prove otherwise, (and I'm really glad that there is, and that this is something people have researched, and even to this day are learning new things about) but you have to trust that I know what is going on with me. Trying to tell me otherwise does, in NO way, make me feel better about it.

And, as someone who is on the spectrum, I have other things that come along with it. I have certain things that bother me, such as tactile sensitivities, (Which is why I can't wear certain fabrics, or how rings bother my fingers so much I can't wear them) and scent sensitivities. (I have to be picky about what cleaning products I choose, know what I like and dislike, can't stand people who wear too much cologne or perfume etc (when the correct amount is basically none hahah)) And so on.

I come across as stubborn, or as hating many things, when in reality, I just know what I like, and sometimes, listening to or watching the same stuff over and over is not only easier but preferred. And this is not only a part of my disability, it is also an anxiety thing. it is comforting.

My mental health  

Anxiety is hard to fully define, depression, too. It is such an individual thing.

I never understood exactly why these two things were grouped together, as if it were one thing. I can understand, to a point how they are related, but feel as though they should be treated as two separate things, though perhaps ones that can coexist in the same mind.
And boy, does my learning disability wreak havoc on my anxiety. Remember that thing that I told you previously about me not catching on to social cues, etc, as easily? 
It causes me to have anxiety attacks, not to be confused with panic attacks. Now, what exactly is the difference? Well, the simplest way to understand this is to know that panic attacks can often lead to suicidal thoughts, and can make you feel as if you're going to die (not always) and anxiety attacks usually do not. But neither are fun! I could go into more detail, but I shall leave it up to the reader to do more research on that.

And the depression part.
Well, this all (officially) started in 2006, though I forget what month. After a big episode, I was formally diagnosed with chronic depression, and I have been on medication ever since. I am lucky, as the first medication they tried, a somewhat newer one at the time, worked well, and they only had to up the dosage once. My depression effects me everyday as well as my anxiety. It affects my energy levels, my will to do things. It makes making decisions harder, and limits how much I can do. Sometimes doing things for me is not a lack of confidence or will, it is simply my mental (and physical) health doing what it does best. 
Do I still have negative thoughts? Yes. Anyone who has depression can tell you that thoughts such as these can creep up on a person at any time. What does this mean? Usually nothing. It's not something I let worry me, but I know the signs of when it gets bad, and what to do. 
To avoid any triggers, if you would like clarification on what to do when you, or a friend has such thoughts, a ton of information is available online, at the library, and at local health centers. The stigma around this? What are some super annoying things that people do?
Well, first of all, we can't just "snap out of it", that doesn't work. We aren't "making a big deal out of nothing." And we can't simply exercise and smile, and it will get better. Changing our diets won't make it go away, and talking it out isn't going to do that either. Suggesting anything, as such, is incredibly ignorant, and rude. 
But we do get thought of as lazy, attention seeking, and crazy, and I am none of those because of my depression. Sometimes, because of depression, AND anxiety, leaving the house is hard. The thought of facing all those people, reality, is too much to bear. It's not just leaving the house. Sometimes even small tasks can seem utterly overwhelming. You brain just says "no." But.. why? "Because no!" And if you do not deal with it as well, it can be hard to understand, but the 'no' is a wall that sometimes one cannot get over.
I have tried my best to keep this as brief as possible, as I could include a lot more. But what I have written here is me, from my perspective, and has hopefully given you some insight as to what me, and perhaps others go through.

And one last thing before we get to the last section of this part is due to various reasons I have C-PTSD. Because that is a very personal thing, and I was unsure of where to place it, I have placed it here, but if you would like to know more on how that has affected me, asking me personally is best.

Part 1 section 2

While in the previous section I discussed stuff about my mental disabilities, in this section I am going to talk about personal experiences and common occurrences based on them.
I am unsure if this section needs a warning, so I will just say continue with caution.
My issues followed me into late teens, and adult hood. I did one extra year of high school, not ready to go out and face the world. But, eventually I had to get work. I took a few pre-employment classes, one that even gave me work experience at two different places. Now, let me tell you some stories.
before that last class, I was working with someone at the local mental health office. A vocational counselor. At first, I thought she seemed nice, if a bit rough around the edges. But, definitely determined. Well, boy was I wrong!

I got my first job at Marks Work Wearhouse, and, for me, the biggest thing that my boss and/or manager, and my coworkers have to know, is that I have a disability. (However, if I choose to disclose, employers only hear the word disability, and assume that means I am stupid and lazy (in my experience.) And, if I choose NOT to disclose, they see my slowness to learn as me being stupid and lazy.) (You can't win, I swear!) However, being that my vocational counselor worked for mental health, my other issue seemed to be of more concern. My depression.
I had the job for about a week, had a few shifts in that time, and on a Friday, when I was on break, I looked at the schedule for the next week and was not on it. I thought to myself, this is odd. I checked again, and the dates were right. I shrugged it off, thinking that the schedule needed to be changed, however, that was not the case. End of the day, going back up to the break area, and someone, (another employee) informed me that I was not on the schedule, because I had been replaced. Boy, what a kick in the pants that was. (I found out the manager, who had said she was going to inform everyone there about my disability, did, in fact, not do that.)
So that didn't work out, and I went to my counselor again, and she found me a placement at a plant nursery. That sounded neat! They were informed of both disabilities, and, for the first bit, I had someone from mental health come in and do the work with me, just to make sure I got it. I forget her name, but she was really nice! So, they told me, we don't do paid training, so no pay for the first week while we train you, and then you get paid. I thought that that sounded reasonable.
Now, I will admit that I could have been a bit faster. (I have learned a lot from my past.) However, a week went by and then no pay. I let it slide another week. Still no pay. I then inquired, and they told me, you're not quite getting it, we will pay you once you understand the job better. Now, being the person that I am, (gullible and super nice) I did not question them, I just accepted it. I didn't wanna cause any trouble.
So, this whole not paying me went on for a while. In fact, they got away with over a month of free work from me! Was I pissed? Yeah! But, what could I do. before one shift, I typed up a letter, explaining that I was leaving, and that this was my last shift. At the end of my shift, they gave me a cheque for $200. Yeah, as if that makes up for everything. *rolls eyes sarcastically*
PS: My counselor said she could no longer do anything to help me. Way to give up. I mean, come on! Seriously!? It's literally your job to help others find work. To help others get jobs. 
As far as common occurrences, I mentioned before about people assuming that I am either stupid, lazy, or both. I cannot tell you how many times this has come up in the past. It is not so much of an issue currently, but I could see it being one, in the right situations. It has also been super common in my life for people to make fun of me because I don't always understand things. And because my disability makes me socially awkward, I have been shy pretty much my whole life. And being shy and socially awkward means that people often viewed me as a loner. Which, to some degree, I was. Something else that happens often is people telling me that they know what I am going through. Even if you also have anxiety, depression, or a learning disability, we are all a little different. So while you may understand some of what I have been through, or some of the things I may have to go through, you are not in my shoes. This is not meant to be rude, merely a reminder that we are all different.
Another thing is people telling me that I only *think* that I have a learning disability because people have been telling me so my whole life, and even I know that that's bullshit!
Anyway, moving on. I shall talk about some situations and common occurrences in regards to depression and anxiety.
The number of times I've had people tell me that I don't need medication, that I can just "snap out of it", as mentioned before, I could not count. People have suggested every which way under the sun to cure my depression naturally, or have told me that it's not real, and I can easily get over it. Well... no. See, it doesn't work like that. Sure, everyone gets depressed from time to time, and for those who do no suffer from actual depression, it isn't that hard to eventually get out of the slump, and get your life back on track. For people such as myself who suffer from chronic, or any form of diagnosed depression, it will never be that easy, and while some natural methods can be helpful, and there are things that we can do in our everyday lives, such as exercise, and eat a healthy diet, although good to do in general, it won't necessarily keep us stable, and won't cure it.
Now, I'm not saying it's always bad. We still know how to have fun, and can even lead fairly normal lives. 
As for an example of a situation? Well, one day years ago, when I was still fairly new to my medication, and some aspects of life in general, I was hanging out in town with some people I had gotten to know, and a guy I happened to be very attracted to. 
He, of course, didn't feel quite the same, but was being very evasive about it, and very distant. Sure, we would also talk online. But never the less, he was very distant, hard to get to, hard to read, and also very depressed himself. 
I got so depressed over the fact that he didn`t like me, wouldn`t listen, and that I couldn`t help him. So much, in face, that I decided that I couldn`t go on living. Looking back on it, it was a silly way of thinking. But, now that I am older, and the medication is doing it`s job better, I understand why I might have thought such things back then.
When it comes to any of this, the best thing that you can do is to ask us what we need, or let us tell you. And listen. Always listen. We know ourselves as much as we can, and therefor, we know what will work best for us.

Part 1 section 3

What can you do to help?
What about helping in terms of my disability? You may think that it's entirely a personal thing, and there isn't really anything you can do. Well, that's not entirely true.
Remember that part where I said that I don't catch on to things easily? A way that you can always help is by being blunt. All. The. Time. I mean, sure... With close friends and people that I've known for a long time, I can pickup on some things easier, as is to be expected. Even then, be blunt and direct with me as often as possible. And, if you are just joking around, and I don't know that, just nicely explain that it was a joke.
Print. One thing that I forgot to mention before is the fact that I can't read most handwriting. So all those fancy swirls and dips that are so common in most people's daily writing, I find it often harder to read than my own illegible scribbles.
Patience. This is another big one. I am slow with a lot of things. Don't expect me to get it right on the first try, or with little instruction. Explain clearly what you want, and show me what to do multiple times, until I have told you that I understand. And, even then, come back to me at a later time and check up, just to make sure. If I make mistakes, don't get mad. Just calmly explain what I did wrong, and how to do it right, so I will hopefully know for future reference. And if I have to ask you again, try your best not to get annoyed.
Remember that I am shy, and have anxiety as well, so if I don't warm up to you right away, am not the first one to talk, or am unsure what to say, I apologize.

But in general, just understanding what I have written and believing me helps a lot!

The Physical

There is a small warning for this piece as the last section gets a little graphic.

My first issue is my bladder. Basically what it is, and I don't know the cause, is that I have an overactive bladder, so I pee a lot more. More so than most people who say that they pee a lot. I haven't counted the number of times I go in day, but estimate it to be approximately 2-3 times that of the average person. I also have incontinence to a degree. This I have had since I was 11. It took me many years to even tell a doctor, and the first doctor I ever told was not even that many years ago. I've been through training, clinics, and I just have to live with it, at this point.

Acid reflux.

Seems simple enough when you say it just like that. But I have had it for the longest time, and once again, as with pretty much everything that is wrong with me, it is idiopathic. What that means it that we don't know why I have it/where it came from, and we cannot do anything to fix it. And trust me when I say we have tried. But what does having chronic acid reflux mean? It means that I clear my throat sometimes, I sniffle, and I have a small semi-regular cough that gets worse at night, and in the colder months. This is due to the acid reflux itself being irritating, but largely in it coming up, turning into heartburn, and things like my throat saying, "hey, we have to protect our self! Let's create a layer of mucus to do that! So... therefor I can be a mucus factory a lot of the time, and it sucks! I do a couple things to try and help when I can. For example, later at night/before bed (especially for the colder months) I make garlic tea. It is exactly as it sounds. A clove of garlic in hot water steeped until it is lukewarm and slowly sipped. You get used to it, but it can help some for sure!

And speaking of things that can't be cured, let's discuss the biggest, and worse issue I deal with, My colon. And I'm just going to warn you in advance that this section gets pretty gross. This information, as with everything else I have written, is very important to know about me, so to anyone reading, I really appreciate it.
Christmas 2010. This is when my most major health issue started.
Since I was a young child, I have had issues with constipation. I remember, at a very young age, having to take suppositories. (Talk about uncomfortable for a kid.) But, there was a time throughout the middle of my life, where I seemed to have no major problems. 
Then right around that Christmas 2010, I noticed things getting worse. I started noticing it was coming back. To skip ahead a little bit. I eventually found out that enemas helped. It became increasingly stressful on me, as any time I would eat anything, anything from something as small as a sandwich, to a full meal, within a half hour, I would have to go to the bathroom. And since giving myself multiple enemas was the only way I could do it, I would be in there a long time. (my record to date was 4.5 hours. And my record of totally time spent it one day (not all at once) being 9 hours.)
Yep. Using suppositories and enemas are the only way I can go to the bathroom. I have significantly reduced the amount of time over the years that I do go, by about half. I'm usually in the bathroom for no more than 1 hour at a time, now, but it can take multiple sessions in the day to finish.
So this is an issue I deal with daily, by the way. It is also stressful in that, if I live with roommates, which I have for the last few years, sometimes THEY need the washroom. But I am in there for so long. It's very stressful. I know they need it. I can't get out any time soon. Everyone get's frustrated. There are also a lot of foods I cannot eat because of this. Just to name a few. Fresh eggs, ie: an omelet, mayonnaise. I can have them say, in a cake, or something where they are well mixed in and not easily recognizable by my body. Anything corn! All bran cereal. Raw bell peppers. Really spicy food. Nuts, but not in large quantities. Just to name a few things. See the photo for the full list.
I spend every day with less energy than most, every day feeling like crap, every day not being able to do as much as most people. Not being able to go out as often as I would like.

It took me a long time to tell my doctor, and even my family, as I was incredibly embarrassed about this issue, and when I did tell my family, I started to cry.
My previous doctor sent me to a gastroenterologist, after trying me on one month of powder laxatives. Nasty things that they are. I also tried multiple kinds of fiber supplements, and just about anything else you can imagine might help.
So, with no avail from that, I finally got to see someone. I was so exited to find a cure, to finally give a name to what was going on with me! I explained to him what was happening, and what we have already tried, and he immediately threw the term Lazy Colon at me. It means that my colon is broken, but they don't know why. It doesn't work, and they can't figure out what causes it. So basically, because they cannot figure out what the cause is, they can't cure it greeeeaaaat. 
But my new doctor said, hey now, I don't know this guy you got sent to, and I'm not the one who sent you to him, and you just accepted his answer? I nodded. So he sent me to one himself. A wonderfully nice man who it takes a year to get an appointment with. When I explained the same type of stuff as I had with the other doctor, and told him the term lazy colon, that he had used, he nodded in agreement. He was awfully surprised that nothing else I tried has worked, so he prescribes this medication that was brand new. He did not have any samples, unfortunately, and informed me that the medication was not covered, though he did not know the actual price. So I took my 60 days worth of prescription to the pharmacy to inquire about the cost, and if it would be covered. (Keep in mind that this is only to try the medication out to see if it will work.) And I found out that it was not covered. And for that many pills the price would be $230 with tax. Wait, $230 freaking dollars!? That's outrageous. I said thank you, and then left. Felling utterly hopeless!
Well, we found out about a form called a Special Authority Approval form, to get certain medications covered.
I saw my doctor and finally talked to him about this expensive medication for my constipation that is not covered.
I asked him if he had any alternatives, and talked to him about the Special Authority Approval form (that is for getting certain medications covered) and he said that maybe the cost would be worth it. So when I told him the price just for this 60 day trial, even he said that that was a lot. My doctor also said he knew of no form for this medication, as it was brand new. (He then went to look it up, and found no such form for this particular medication.) So he told me to talk to the pharmacist to see if they knew something that he didn't about it being covered. And when I got there and asked the guy if he knew if there was a form for this medication, or if it was going to be covered, his response was that he has not heard of this medication ever being covered. That it was, as far as he knew, never going to be covered. Well FINALLY a couple years ago, the doctor I had at the time went through a place called the Compassion Care Program. It gets the whole clinic covered, so I don't have to pay. It took forever, and many doctors signature, but I was SO happy! The only issue is, every time I need a new prescription, the clinic has to reapply! At any rate, I started on the medication, knowing full well that the first few weeks would have horrible side effect, but found that I could not work it into my schedule, so another dead end. Alas, another issue I will just have to live with forever.

And on top of it affecting all the previously stated areas of my life, I am also starting to notice that the way I have to deal with it has had a very negative effect on my knees.

Let's skip forward now to a time where I can refer to what I have as IBS-C or Chronic Idiopathic Constipation.

Basically I require a proper sized bathroom because I have to do this awkward move. And its complicated and wheee.
So... I'm no better, yet no worse, and will probably still have this problem for life.
I never feel well ever, and in the next section, I will tell you what you can do to help, and what not to do.

Section 2 

So how exactly can you help with all this? What shouldn't you do?
Here are the do's and don'ts when it comes to my health.

• Don't send me any information on how I can fix my problems, help my problems along, send me tips, or make suggestions. NEVER do this! With those of us who have chronic health issues, we cannot tell you the number of times that his has happened to us. Sure, in the beginning it was not so bad for me. Heck, I had no idea what was going on with my health, at first, and suggestions were welcome. But they got old real fast. 
• Do ask me what you CAN do to help. And IF I need your help, I will let you know. But if I tell you not to help, don't feel offended. It's not meant to be rude, I promise.
• Don't act like you go through the same thing, or have. Even if you have gone through something similar, it probably was not as bad as what I am dealing with. This is not a competition, of course, it's just a tad insulting when someone tries to relate to what I have, when they could not possibly know what it is like.
• Do let me know that while you don't know exactly what it is that I am going through, you are always here if ever I need to talk about it.
• Don't pressure me into doing things or going out when I do not feel well enough/up to it/get mad at me when I cannot come out or visit as often as you would like.
• Do realize that I almost never feel well, so while I would like to get out and live a normal life, doing things as often as once I could, that I cannot, and realize that there is no need to feel insulted by this.
• Don't tell me that I am wrong, or that this is not how bodies or health works. My whole body is out of wack, my immune system is not as good as a result, as well as many other things. 
• Do realize that not everyone's body is the same, and therefore, what works or is a certain way for one person, or most people, may not work for me.
• Don't be ignorant towards my issues. (especially if they weird or gross you out)
• Do learn about what I go through, research it, ask me as many questions as you like, learn the things I can and cannot eat, memorize important fact, or do's and don'ts.

And remember, it's okay to be unsure, confused, or even a little uncomfortable.