So far we have talked about why I wanted to speak about this subject in part 1, and my diagnoses (or essentially why this is so relevant and important to me) in part 2. If you missed those posts, you can find them here at Part 1 and Part 2.
Today I wanted to talk to you about something that ties this together. While it’s not the only issue, its something I see as one of the big issues that women, people who are overweight, and people with disabilities deal with to one degree. In one way or another they all, in a sense, have their voice taken away. What do I mean by that? People constantly talk over you, they put words in your mouth, and they often think they know what is better for you than you do.
Lets talk about the concept that I think most people will be familiar with first. Unless you are living under a rock you have heard of the concept of mansplaining. As a matter of fact I recently had a man interrupt a conversation I was having with someone else so he could mansplain mansplaining. It’s really not uncommon for women to feel like men, or even on occasion other women, are taking their voices away. Now if you feel you have never experienced mansplaining, then I am over-joyed for you, but you are in the minority.
But it’s not just by mansplaining that we have our voices taken away as women. A ten minute look at congress will show you a large group of men who think they know what is best for women and their bodies. From dictating what birth control health care will cover to deciding what choices are right for a woman’s body, they think they know what is best for us. They put in place laws that limit our choices and effectively take out voices away from us.
But what about people with disabilities? How are their voices stolen? Before I go any further I want to preface this part by saying this is based on my own personal experiences. I have spoken to other people with various disabilities, and this seems to be most, but not all, of what I am going to talk about is more of an issue for people like me who suffer mainly from invisible illnesses.
Here are some of the things I experience on a regular basis as a disabled person. It’s not unusual for people to question if I am really sick since they can’t see anything wrong with me. If they aren’t questioning my health itself then I typically get unsolicited advice on how I should be dealing with my health or people questioning if I have done enough to try to get better. Now sometimes these things are said out of a good place, and I try to recognize that. But the idea that I somehow wouldn’t try, or at least investigate, everything that is available to me to get better is a little absurd. But when I tell people as much, but in a nice way of course, I get incredulous looks or responses of how I must have tried something different because their friends daughters best friends sister has the same thing as me and it worked for them.
But it truly goes beyond just the average person on the street that you deal with. You would think that the treatment you get from a doctor would be better. Sometimes it is easier with a doctor, but a lot of the time it’s not. Doctors aren’t always fully trained on every illness, they are also sometimes directed in a certain way by state laws or hospital policies that may not actually be for the best of the patient. And really they are just people and make mistakes too.
I shared in my previous post that I actually suffer from several chronic pain conditions, including fibromyalgia. In the state I live in there are still doctors who don’t believe it exists, and I have been told this by a couple of doctors before. One took it so far as to tell me he thought I was just being lazy. But then if you do find a doctor who will treat you and believes you, if you dare state that you know what medicine works for you, then you are treated like a drug addict.
Being fat (insert plus size, curvy, pleasantly plump, Rubenesque, or whatever you want to call it here) in the US, and maybe other places too, comes with a lot of those same sorts of examples. People make unwelcome comments about how they think you look, what you’re wearing and whether they think its appropriate for someone your size, and especially about what you are eating and whether they think you should be or not.
People really seem to think the only reason someone might be fat is because they don’t know how to make good life decisions. Or maybe they think we are too stupid to know if you overeat that it will cause you to gain weight. And so by telling us these things, they are then going to be this awesome hero that sweeps in and saves the day. But in reality life isn’t that simple. There are tons of reasons someone might be overweight, and at least for the majority of people I know, overeating is not what caused them to gain weight.
And again, you would think that you would have better treatment from a doctor, but in my experience that is not the case. You would be surprised at how many doctors just make that assumption that because you are over weight you automatically are going to have high cholesterol, diabetes, etc.. I have actually had a doctor say to me, “No, you’re too fat to have better numbers on your cholesterol and blood sugar than me. This can’t be right”. And it’s not just rude statements like that, I could probably live with those if I felt I was getting the best medical treatment possible. But the shear waste of time that is involved with these preconceived notions is unacceptable.
When I was at my worst, health wise, it often meant going to the doctor at least once a week. It took forever to find doctors who were giving me quality care and not just focusing on my weight. It’s not helpful to go to the doctor and have your blood drawn by the same doctor at every visit simply because the doctor can’t get beyond their own personal biases. Now if you are relatively healthy, and you only go to the doctor once a year for an annual physical, then its acceptable. But let it sink in, I literally had doctors who wanted to draw my blood on a weekly basis, just because they couldn’t believe it was possible for me to have healthy levels of blood sugar and cholesterol.
Now maybe you have read all of this and you don’t understand why I am saying people are taking our voices away. It really comes down to this, I think anytime someone doesn’t listen to you, thinks they know what is better for you, doesn’t respect your opinions or the facts, then they are essentially taking your voice away. Whether someone’s intentions are good or not is besides the point. And women, fat people, and disabled people are not the only ones who experience this, I think anyone in a minority group or oppressed group experience these things as well.
I would love to hear what some of you have experienced yourself. Tell me in the comments how people have been trying to take your voice away. Or if you want to disagree with me leave that in the comments too. All comments will be approved unless they are disrespectful or of a bullying nature.
I have only ever sat down and made a list of everything I have been diagnosed with once, and that was quite a few years and diagnoses ago. I found it quite overwhelming at the time due to how many there were at the time. I think that has a lot to do with why I was so hesitant to write this post as well as why it took me so long to write it. If I find it overwhelming and hard to understand it all, how are you suppose to understand it?
Rather than try to go into the complete definition and all of the symptoms of each ailment, I will link everything I can to places you can get more information. I will just talk about what I feel bothers me the most and do my best to talk about the challenges caused by each illness. I have put everything in order of most disruptive of my life to least, or most difficult to deal with to least. Please keep in mind that is completely subjective to my personal experience and my experience does not represent everyone’s experience with an illness.
Fibromyalgia (a.k.a. in the past as fibromyalgia syndrome,fibromyositis, and fibrositis) – This is both the most difficult illness that I deal with and the one of the most difficult to explain to other people. It’s so complicated, and there is so little known about it even by doctors. However, I will do my best to describe what I go through to you.
I have lots of pain. There isn’t a moment of any day that I am not in some sort of pain. And it’s not just one type of pain or even located in one place. One moment I might have a random pain in my foot and the next my shoulders are hurting. Sometimes it might be a stabbing pain and other times it feels like someone has taken super hot rubber band and put it around an arm or leg and tightened till the circulation has been cut off. Sometimes even the lightest touch becomes painful. This one is a unique pain though. The best I have ever been able to describe it is like this; think of that feeling you get when someone runs their nails down a chalkboard, now times that feeling by ten and instead of it being triggered by sound its triggered by touch.
The next biggest thing I have to deal with when it comes to fibromyalgia is what is often referred to as brain fog. This means I often have memory loss, but it’s not like the kind of memory loss you think of with amnesia or Alzheimer patients. With brain fog you don’t actually lose the memory so much as you can’t access it for a brief period of time. For instance you might be in the middle of saying something and then just can’t get a word out. Or maybe you constantly can’t remember people’s names, even the ones you have known for years. But then ten minutes later you will remember what you were about to say. You continually have that feeling of having what you were about to say on the tip of your tongue. I personally find this symptom distressing, especially when dealing with people who haven’t known me for long or don’t know how my illness works. This is because it in a way strip me partially from my identity. I feel like the intelligent and creative mind I have is hidden behind constant pauses with me saying uh I can’t think of the word I was trying to use.
In addition to the pain and brain fog I deal with fatigue, temperature sensitivity, sleep disturbance from the pain, and numerous other issue. There are also many other illnesses that go hand in hand with fibromyalgia as well as some have similar symptoms. It can get really complicated to tell what is causing what. But I will talk more about that as we go.
Chronic Fatigue Syndrome – I think that the name of this makes this sort of deceptive to people. People hear fatigue and focus on that. You can’t imagine how many times I, as well as other people, with chronic fatigue have people ask something like “so your just tired all the time right?”. But it’s more than being tired. I have periods of time that I am so fatigued I literally can’t move to get out of the bed. Or I try to get out of the bed and my whole body will just shake and I can’t function. If I try to push myself past this point it actually triggers my fibromyalgia to get worse and I can get sick and stuck in bed from a flare up. This may last a few hours or a few weeks.
This is one of the illnesses with tricky to distinguish symptoms because I have so many other things wrong with me that may cause fatigue. For example one of the symptoms you can have with fibromyalgia is fatigue, but for me I have found the level of fatigue is very different. And it is very different from the feeling of just being tired from not sleeping. It took me a while to really figure out the differences and what to do to handle my illness.
Chronic Insomnia – I suffer from both Primary and Secondary Insomnia. The difference between Primary and Secondary is that Primary Insomnia does not have any underlying medical reason like pain or sleep apnea that is causing the insomnia, and secondary does. You might wonder how I have both Primary and Secondary, and how I distinguish between them. Well, I have dealt with Primary insomnia since I was a very young child. It wasn’t till I was older and started dealing with pain conditions that I had Secondary Insomnia, and you can very easily tell whether you are awake for no reason or if you are awake because of pain.
If I had made this list ten years ago, maybe even five years ago, insomnia would have been much farther down the list on things that bother me. As I said, I have dealt with this since I was a young child. It was never unusual for me to run on three or four hours of sleep. Sure I felt a little tired at times, but for the most part I usually just dealt with it and no one could ever tell. But in the last five years or so, it’s become increasingly harder and harder to deal with. I just can’t recover from it anymore.
Ruptured Disc (a.k.a. slipped or herniated disc) – When I was 24 years old I woke up one day and I was in immense pain. I was in so much pain I couldn’t walk without assistance, and I was barely able to move my legs. I was told I had a ruptured disc at L5/S1 and that it was one of the biggest ruptures the doctor had ever seen without the disc completely breaking. (I later found out I had another much smaller ruptured disc in my upper back, but this one is the one that causes the majority of my problems).
I was in college and working two-part time jobs, so I had no health insurance and had little money. I was fortunate that I had a chiropractor that was willing to work with me till I figured out how to pay. And I knew the right programs through the hospital to help pay for the expensive tests I needed. I ended up being in this severe of a condition for about six months, though I still have problems with it till this day. And as you will read further in, it caused other problems as well.
During that time I essentially went from someone who was very active to almost a completely sedentary life. Beyond the pain it had numerous ramifications on my health , my mental well-being, and my body. Typically people who have issues with a ruptured disc that are as severe and that last as long as mine have would have surgery. Even if I wanted surgery, it is not an option for me, and you will understand why as you read further.
Sciatica – Sciatica causes pain to radiate from your lower back or buttocks down your leg and to your feet and toes. Where the pain ends has depends on what the cause of the sciatica is and how severe the problem is. It typically is only on one side of the body, however for me due to a hip issue making my ruptured disk move back and forth, the pain can be on either side. But most of the time the pain is on my left side. My sciatica was long lasting. This was one of the many problems caused by the ruptured disc I have.
Endometriosis turned out to be Adenomyosis – You may be far more familiar with Endometriosis, or at least heard of it, than you are with Adenomyosis. There are many similarities and differences between these two conditions. The biggest distinguisher between the two is that with Endometriosis the Endometrial tissue grows outside the uterus and can grow anywhere in the body, and with Adenomyosis the Endometrial tissue grows into the muscular wall of the uterus. Also, since Endometriosis can spread throughout the body, it can never be definitely cured, however Adenomyosis can.
Both conditions can be extremely painful, and because they have so many of the same symptoms and treatments they often are both diagnosed as Endometriosis. And from my understanding, Adenomyosis can only truly be diagnosed when a hysterectomy is performed, which is what happened to me. So for years I was treated as though I had Endometriosis.
From the time my period started at the age of 12 they were heavy(in a way that is not explainable unless you have experienced it), painful, and embarrassing. I tried to find out what was wrong for years and had gotten many other misdiagnosis like PCOS, but I will talk about that more in another post. When I was in my mid 20’s I finally got a diagnosis of Endometriosis, and that finally made sense. After using various treatments on and off for about ten years my symptoms finally got to a place that it was necessary to have a hysterectomy.
As a woman, the word hysterectomy can be quite frightening in and of itself. So I think its needless to say there was a bit of stress I went through over the decision to have a hysterectomy. But I found the support of other women and much-needed information through the website Hyster Sisters, and it really got me through the hardest points. I can now say it is one of the best decisions I have made for my health, and I actually wish I had done it earlier.
Nerve Damage – One of the long-term repercussion of the ruptured discs I have is nerve damage. I have nerve damage of varying degrees in my lower back, down both of my legs, and down my left arm. This means I have varying degrees of numbness in some areas, decreased reflexes, and occasional issues with motor functions.
Migraines – I have had migraines since I was thirteen years old. In the beginning I would have them occasionally. I really just assumed it was going to be like my grandmother who also gets them but she gets them maybe once every other month or so. When she gets them she ends up in the bed for a day or two and then she is better. And in the beginning that is how mine were as well, or because I had a lot to do I would typically push through the pain.
As I got older the migraines got more frequent. By the time I was in my late teens I was having at least two migraines a week and I had started to figure out some of the things that triggered them, but also realized because of the world we live in it is hard to avoid. Again, because of a lack of health care and living in extreme poverty I didn’t actually get the official diagnosis until about the age of 25.
After I was diagnosed I was put on a preventative medicine called Topamax. There are various preventative medicines on the market, not all of them work for everybody. I was fortunate enough to hit a home run with the first one. Topamax does have some pretty heavy side effect, so if you don’t have a well-informed doctor helping you it can be dangerous. It is definitely not the medicine you want to go on and off of on a whim, but side effects are something I will talk about in another post. Lets just say that this was like a miracle drug in many ways for me, but it does have some drawbacks. And once I really got to a point where my headaches were under control that’s when I realized how bad they really were and how much they were really interfering with my life.
Interstitial cystitis (a.k.a. IC, irritable bladder, or painful bladder syndrome) This is one of those odd illnesses that you probably never heard of unless you either have it or have thought you had it at some point. IC is one of those illnesses that are not uncommon to have if you have fibromyalgia or chronic fatigue. I think people are far more familiar with irritable bowel syndrome, or IBS, however it works very similarly just with your bladder instead. However, IC can be more dangerous than IBS. Left unchecked IC can actually cause your bladder to explode. The good news is there are things you can do to help with you bladder. So if you suspect that you have IC, I urge you to see your doctor to have testing done.
Cluster Headaches – I thankfully don’t get these often, I don’t think I would survive if I did. And they would be much further up the list if I did get them often. When I do get them, the pain is intense. I often feel like I have a hot poker pushing through my eyeball. Not much more to say than that.
TMJ Disorder (Temporomandibular Joint Disorder) – This is another disorder that is often associated with fibromyalgia. Don’t get me wrong, you do not have to have fibromyalgia to get TMJ, but if you have fibromyalgia it’s not unusual to have it. TMJ can be caused by a few things, mine caused by the alignment of my jaw not being correct at times.
When that happens some of the things I can start having issues with is opening and shutting my mouth, my jaw clicks when I open and shut my mouth or even chew, pain in the jaw joint, pain in the ear area, and facial pain. Thankfully my TMJ has been reasonably easy to treat as of yet.
Balsam Of Peru – This is one area of my health I have talked a lot about here on the blog. Since I cover a lot of beauty issues and part of this allergy verges into that arena, it’s kind of relevant. So rather than linking you to an outside source for this one, I have linked to a previous article that I wrote about my allergy. It links to plenty of reference articles. All I will say here is it is one of the most complicated allergies you can have. It causes you to have reactions to hundreds of items in beauty items, food, and medicine. I may have reactions in the form of Contact Dermatitis, blisters in my mouth, or a migraine.
Dust and Dust Mites – The only time I seem to react to the dust and dust mite allergy is when I am cleaning. I am guessing this is because this is when they are stirred up into the air. I range from having a brief sneezing fit to a full on sinus infection after.
Mold – This is my most recent diagnosis. I haven’t had any treatments yet or leaned a significant amount about it. I had suspected for a while that I was allergic to mold, but went to get tested because I had read there was a possibility that some people have been misdiagnosed with fibromyalgia who actually have an allergy to mold. However you can also be both allergic to mold and have fibromyalgia. But the symptoms are very similar. This is of course something I am still looking into, so don’t put too much stock into it.
Raynaud’s Disease – This is another one of those odd diseases that you probably haven’t heard of unless you or a loved one has it. It only bothers me about half of the year, but if you live somewhere with a colder climate then you might have issues year round. What happens to people with Raynaud’s Disease can be a little different in each individual, but here is what happens to me. Anytime I am exposed to temperatures below forty degrees my fingers (sometimes my toes and nose as well) start to go numb and they ache. They even start to turn blue, sometimes they turn white. Then as they start to warm back up I get painful tingly sensations, like the sensation you get when a limb falls asleep and you are trying to get the circulation back, but its twice as painful. And the area turns red and swells.
This has honestly happened to me for a long time. I just never knew it was anything but normal until I read an article someone posted on Facebook about this condition a few years ago. I then asked my doctor about it, and then I was diagnosed.
Degenerative Disc Disease – Even though this is called a disease, it’s not a disease in the sense you typically think of a disease. Degenerative Disc Disease is really just the normal breakdown of the disc in our spines that happens as we age. However when it happens at a normal rate it usually doesn’t get referred to as Degenerative Disc Disease, it is only described this way when things happen to cause it prematurely. I was told at the age of 25 that my spine looked like that of a 80 year old woman’s.
There are many things that can cause it or at least contribute to it. This is one of the few cases in my health where being overweight really can be harmful. It does put extra pressure on your spine, so it can contribute to how fast the discs deteriorate. In addition injuries caused from falls or car accidents may cause the start of Degenerative Disc Disease as well as bone spurs.
Arthritis – When I was in third grade my school gym class often had days where we had indoor activities due to weather. One of those many days our gym teacher decided we were going to have relay races. When I was running into what was our home base for the race, I fell and slid in. Had this been outside it would not have been that big of a deal. However, it was a big deal because it happened on a concrete floor. I ended up cracking my knee caps, of course we didn’t know that is what happened at the time. Since we didn’t have insurance my parents held off on taking me to the doctor. To be fair I didn’t complain a lot. I told them it hurt but I wasn’t crying in pain. I don’t think they understood the severity at the time. It ended up being two weeks later when I made it to a doctor. The bone had already started to heal wrong by then. All they could do at that point was give me exercises that would hopefully help. But of course being a kid I didn’t do most of them.
Depression – I think most people suffer from some form of depression at one point or another in their life. But not all depressions are created equal, there are different types and degrees of depression. For some it is a short-term issue and for other people their depression is a lifetime issue. During my teen years I often felt down, but not fully depressed. I think the best reference would be I felt melancholy.
When I got older and my initial major health issues hit, that left me feeling majorly depresses. More than that I had feelings of rage and of morning. The type of depression I was going through, I now know is not unusual for someone who has become newly disabled, but it really scared me. After experiencing years of dealing with a parent who had bipolar disorder and refused to get treated, I didn’t want to be that person. So I went as soon as possible to go get myself a therapist. I got checked and thankfully I do not have bipolar disorder. But I did get a lot of help for what I was feeling at the time.
I wholeheartedly encourage everyone to seek out a mental health professional in a time of crisis or if you just feel like you need someone to talk to. It doesn’t mean you are crazy. It doesn’t mean there is something horribly wrong with you. Your just human, and we all need some help sometimes.
Sialolithiasis (a.k.a. Salivary Duct Stones) – This is once again one of the odd illnesses that I have that you just don’t hear about unless you have it yourself or someone you are very close to. You may even already be thinking what the heck is Salivary Duct Stones(I am pretty sure most of us can’t even say the other name for it, or at least I know I can’t)? Just like you can develop stones in your kidneys or gallbladder, you can also develop stones in saliva ducts. Some people are just more prone to it that others.
Imagine going to sleep one night and everything is fine, the next morning you wake up and notice you have a small knot on your neck. It was so tiny at first it gets dismissed as a large pimple. But throughout the day it increases in size and starts to become tenser to the touch. By the next morning it’s the size of golf ball. Obviously you go to the ER at this point. Now know what this is, and as funny as it sound, it is still not something you would want to play around with as far getting checked out by a doctor. I was lucky and the simplest treatment available worked for me, and has continued to work the other two times it has happened. But this can become serious, especially if it becomes infected.
Chronic Dry Eye – I think everyone understands what Chronic Dry Eye is. What most people don’t know is there are a ton of things that can cause it from other illnesses to medication side effects, or even the way you eye is shaped. My chronic dry eye is a combination of having a very severe keratoconus astigmatism causing the tears to evaporate quickly and my contact dermatitis clogging my tear ducts. The type of treatment used for your Chronic Dry Eye depends upon the what the cause is.
Sleep Walking – Apparently its unusual for adults to sleep walk. So yeah, I know, Its amazing I have something unusual. It actually runs in my family. My father is worse than I am when it comes to sleepwalking. There are various things that can cause sleepwalking in an adult. I actually attempted to find out what is the cause of mine and if there is any way to stop it. However the place I went was not very helpful, and I never found out what was actually causing it. My sleepwalking seems to happen in spurts, so if it ever gets to a place where it is problematic again I may go to another sleep clinic to try to find the cause.
Keloid Scars – Keloids only develop on people who are genetically predisposed to them. They are overgrown scar tissue that cause very massive growths after a cut or scratch. If you remember back to me saying I was not a candidate for surgery on my ruptured disc, this is why. Keloid scars in general just cause cosmetic issues and maybe some itching, however there are exceptions like me not being a candidate for surgery. While most of the scar is topical, there is a small bit under the skin. Because they are so large and dense, and because of where my ruptured disc was located, the thought is that if a keloid were to form after the surgery it could cause worse problems than I already have.
Sebaceous Cyst – Sebaceous cysts are caused by blocked sweat glands or hair follicles. The oil and dirt build up and cause a bump to grow under the skin. Usually they are larger than acne, and they can be anywhere on your body. Typically I would say that these are just bothersome and a cosmetic worry. However, while I don’t get them often, I do get them close to my spine. This seems to cause some discomfort because of the pressure it puts on my spine.
I am not going further with the list and explanations. I didn’t include things that were one time incidents like the kidney stone I dealt with. I also didn’t include things that have long since healed like my torn elbow tendon. Nor did I include things that were chronic, but I have long since figured out what was the cause and put them to rest like my COPD from hAsthma and Chronic Bronchitis. I didn’t even include my many misdiagnosises, unless it was relevant to something I was already talking about, including the ear infections I was constantly diagnosed with as a child. And I am pretty sure there are even a few things that I wanted to talk about that I didn’t.
This post is already way longer than I wanted it to be, but I wanted to talk about as much of my diagnosises as possible. So if you have made it this far and read all about what is wrong with me, your probably for one wondering what any of this has to with being fat, and I promise I am getting to that soon. I actually wanted the next piece in this series to be about how being fat affects you when you go to the doctor and how being disabled affects you. And where the similarities are in those two things. But that may get pushed to the next one. It may all depend on how much information I can get on the upcoming vote on the Trumpcare Bill that Mitch McConnell is trying to force through a vote next month.
And Speaking of the Trumpcare Bill or the amended ACA, I said I would let you know where I stood as far as pre-existing conditions. I mean my title is I Am A Pre-Existing Condition. So here goes, based on the initial list released here are the things I have or have previously had that make me a pre-existing condition.
Mental Disorders (they say this includes Anxiety, Bipolar Disorder, Depression, Obsessive Compulsive Disorder, Schizophrenia)
That is fifteen pre-existing conditions. And they aren’t even for the weird obscure things I have, its the everyday things that so many people have. Things you would expect your insurance company to cover. For the full list of pre-existing conditions you can find them here. (Note: as I awoke this morning, right before my final edit of this post, I read the Trump Care Bill as it currently stands has been scrapped. However, they will be back with another bill soon, they are going to be pushing for the ACA to be done away with completely and starting something new. I will try and have more details on that later)
Tell me in the comments below, what makes you a pre-existing condition? Also let me know if there is something you want me to talk about further regarding health or if there is something specific I haven’t talked about yet about being fat and sick.
I have wavered back and forth about doing this post for the last month or so. If you have followed me here on the blog for any amount of time you know I have health issues, but you probably don’t know to what degree they truly affect me. And to be honest even most people who know me in person don’t know how affected I am by my health, and how much of a struggle it is at times just to live.
You may also have noticed that since around Christmas time I have significantly slowed down, both here on the blog and on social media. Unfortunately that has been not of choice, but out of necessity. I have had moments where I have done more, either because I had a break and started feeling better, or out of obligation I pushed myself past the point I should have and worked anyways.
Please understand, the things I just said and all the things I am about to share with you are not for pity. I am absolutely not sharing this for pity, nor do I want anyone’s sorrow or pity. But under the current governments administration it is very clear that I as a fat, disabled, woman am being treated as a person that has no value and in many ways am under attack.
Because of the nature of my blog I think that most of the people who visit here will already identify with being a woman, especially a fat women. And even if you are, for the most part healthy, you can probably still appreciate the extra frustration that comes with dealing with healthcare. All the extra time spent talking about your weight, even when it has nothing to do with what you are there for. Or the down talking you get for just being a woman. But there is a special sort of hell that you go through when you add having disabilities into the picture. Part of that is because when you have the types of disabilities I have, essentially your job becomes going to the doctor. And its ridiculous how long it can take to find a doctor who will simply take you serious enough to actually look at you like a person and try to find out what’s wrong rather than just going with “it’s because you are fat”.
Ultimately I suppose I have a few goals in writing this post. I hope maybe for those of you who are completely healthy to perhaps gain some understanding of the people in your life who are disabled. I would love for people to understand how the healthcare changes massively affect people with disabilities and how congress trying to get rid of the ADA(American’s With Disabilities Act) at the same time makes it feel like a war against the disabled. And more than anything else, I want other people who are going through similar things to know they aren’t alone.
So in the beginning I mentioned that I struggled with whether or not I wanted to write this post. Obviously I did decide to write the post, but I decided I wanted to make it as thorough as possible. Since I foresee this becoming very long and possibly overwhelming, I decided it was best to break this into multiple posts. In this first post I really just wanted to share why I wanted to talk about this topic and what I hoped to accomplish from it. In the next post I want to talk about my own diagnoses, what difficulties they actually cause for me, and under Trump’s healthcare bill how many would be preexisting conditions.
I do plan on having several parts to this, but I am not sure how many exactly. I think this will be done when I feel like its done. If you have any questions or topics you want me to address in the next part, please feel free to post them in the comments or go to my contact page and send me a message.