You Are Not Alone - What It's Like To Have A Chronic Illness
Being Diagnosed Changes Your Life
There are lots of chronic diseases out there and many of them are deadly (for instance diabetes, heart disease, cancer, HIV), but not all of them are (for instance Alzheimer's and Parkinson's.) Chronic means the disease is incurable. Everything is different now and it's never going to be the way it used to be. If you have a chronic disease, your body might feel out of control and you might be forced to face a reality where you're in pain for the rest of your life. The public usually scrutinizes people with chronic diseases, misunderstanding everything about our diseases and our treatments. It can lead to embarrassing moments.
People with chronic diseases rarely talk about these realities because they're pressured to be positive all the time, even when life is a struggle every day.
I'm writing this mostly from the perspective of a diabetic because that's the chronic disease that I have, although the videos are from people with all kinds of different diseases, like endometriosis and fibromyalgia. I hope you learn something if you don't have a chronic disease or you feel less alone if you do.
It Takes Over Everything
You don't want to be the person with "the disease", but suddenly you are. It's such a big part of your life that it's hard not to mention it on occasion.
For instance, diabetics are supposed to eat at the same times every day. This makes Thanksgiving very awkward because almost everyone eats at 2 or 3 o'clock and no diabetic can have lunch that late or dinner that early.
People might think,"Oh, what's a low blood sugar one time? It's not a big deal." When my blood sugar gets too low sometimes, I am sick for days with a migraine. It's hard not to overeat when your blood sugar is low because you feel like you are starving, then it spikes super high and you get trapped into this roller coaster of highs and lows that is hard to recover from.
A common way for diabetics to die is low blood sugar. We can't skip meals for this reason when we are on medication. Sometimes we don't even want to eat, we just have to. Because a healthy person's body will naturally produce insulin after they eat and ours does not, so we have to take medicine every day. The medicine lowers our blood sugar the same way every day at the same times. If we take our medicine and don't eat, our blood sugar will lower anyway and we will get sick. That's why it's better when your body can do this naturally because it only lowers your blood sugar the right amount and never lets it get too high.
We hate being the burden. The one to "whine" about the time lunch or dinner is being served. I've had to do things like ask my husband not to eat certain foods anymore because they tempt me and make my blood sugar spike. Do I like asking my healthy husband to go on my diet, too? No. I want him to enjoy life and allow him to eat what he wants. I want to be quiet about it.
But when you're quiet, it hurts your body. If you ignore your disease, it grows out of control. So sometimes having a chronic disease means a constant battle between what's normal and what you have to do to take care of yourself. You have to adjust to the new normal and so does everyone around you.
I've tried, by the way, eating lunch before a late lunch party and people always shove food in my face and ask me why I'm not eating. Then I have to explain the whole thing. Because it's taking over my life and there's no way for me to escape people finding out about it.
It's Hard Not To Get Depression
We will never know for sure why Robin Williams, beloved actor to us all, killed himself, but it certainly doesn't help that he was diagnosed with a rare and serious form of Parkinson's disease that went along with dementia, both chronic diseases.
I thought I knew after seeing my Mom struggle with diabetes for years, what it would feel like to have a chronic disease, but I didn't know even the half of it. I had to eat her sugar-free food growing up and her weird meals. I went with her to some of her doctors appointments and things, but until I got the disease myself, I wasn't really experiencing what she was.
The drastic changes in my life, the constant fear of death, the way doctors looked at me differently, were all like a blow to the face. I cried non-stop for the first two weeks. I kept checking my blood sugar, hoping things were somehow different now, and seeing that they were still the same. It hurt, it was scary, I was overwhelmed with depression.
And I was ashamed of it. I never saw another diabetic cry about being diagnosed. My Mom didn't cry when she got the disease. I thought something was wrong with me or that I was being a baby, but the truth is, people with chronic illnesses are at a much higher risk of depression and suicide. What I was feeling was normal, but a lot of us hide it or are too ashamed to talk about it. It is hard especially when you are talking to people who are used to the disease and kind of hardened to it. They want you to get over it like they have and just accept the realities of it, forgetting that it took them years to get to this point.
But I am here to say that whatever the chronic disease, whether it's something you were diagnosed with or a friend, it's perfectly normal to be depressed about it and whoever tells you otherwise is a liar.
Read More About Robin Williams, His Chronic Disease, And His Suicide
The Medications Can Hurt You As Much As The Disease
I first watched the show, Breaking Bad, before I was diagnosed with diabetes. I admit that I didn't understand at the time why the main character was resistant to treatment for his cancer at first. Didn't he want to live longer?
First of all, receiving treatment for your disease can kill you. I knew a forty year old woman, when I was sixteen, who died from her chemotherapy, even though she was cured of cancer. It weakened her immune system and incurable bacteria, found mostly in hospitals, took her life instead.
Secondly, receiving treatment can feel like torture. Going to the doctor is torture as well and you pay a lot of money to receive all of this torture, which makes you feel guilty because of what it does to your family.
Having diabetes has destroyed my teeth for instance. I've always had problems with my teeth though even before I got diabetes. I had braces and dental work done as a teenager, but my diabetes made it so much worse. I've barely turned 30, but in my life time, I've had 13 teeth pulled, 6 root canals, and about 30 cavities filled. I'll also be getting dentures soon. I've had lots of complications at the dentist. I've had bad reactions to the numbing lidocaine injections that they give you (it almost killed me.) I've had my teeth drilled into with nothing numbing it. I've had dentists mess up and drill into my cheeks multiple times, so that I started bleeding all over the place. At this point, I am terrified of the dentist because they make me sit down and I don't know what thing might go wrong. The work never lasts. My teeth always rot away quickly again. So much money was put into nothing.
When you have a chronic disease, it's not like having a cold. For a cold, you take your (cheap) antibiotics for two weeks and you're cured forever. When you have a chronic disease, you go through invasive tests that sometimes play on your fears (like MRI's and claustrophobia), that you must repeat over and over again. You take medicine that will probably make you feel sick (the majority of strong medications, stronger than antibiotics, will give you some side effect, it's about which ones you can live with) and when you go to the doctors again, they tell you every time how you are still in horrible shape. There's still no cure and you could still die so easily.
After awhile, you'll probably think, why am I going through all this torture if it can't even cure me? I work ten times as hard to be half as healthy as a normal person.
The more medications you take, the more side effects you have. You know if you don't take them, you will die early, but at least you'll be happy and not as sick until then. Because take enough tests and get enough treatments, you'll lose all reasons to want to be alive because your disease and medication will get in the way of all of it.
People get so mad at people with chronic diseases for not following the doctors' plans, but you have to realize how much following those plans might destroy all their reasons to live. With no reasons to live, the treatments aren't going to work anyway because then the person won't care about being alive anymore.
This is why it's so hard when you have a chronic disease not to feel depression or go into denial.
Doctors Get Impatient With You And Mistreat You
Doctors love fitting people into boxes and stereotyping. They learned everything they know from books and lists of symptoms. Most of their job consists of wanting to force all their patients into one of those lists and give them treatment that works on the majority of people. So if your disease is weird or complicated or if a treatment doesn't work on you that works on "normal" people with your chronic disease, they'll get angry at you and accuse you of lying or exaggerating or they'll say the whole thing is just your fault for not cooperating.
For instance, doctors' offices have started having these new machines that automatically check your blood pressure for you, instead of the nurse checking it manually. This works on the majority of people, like my husband, with no problem. It doesn't work on me. They always squeeze my arm so hard that my hand turns purple and then at the end of it, there is an error because it can't read my blood pressure, so the nurse is forced to take it manually.
Every single time I go to the doctors. Every. Single. Time. I have the same conversation with the nurse.
I say,"You have to check my blood pressure manually. The automatic machines don't work on me."
They say,"No. I'm really good at working these machines. It will work this time."
I mentally roll my eyes (no one can be good at working these machines, the machines do all the work) and take the test anyway because it's not going to give me any lasting damage.
It hurts really badly when it squeezes my arm that hard. There's an error at the end of the blood pressure test and they don't like that I don't fit in the category of the majority of people, so they say:
"You weren't relaxing enough. That's why the machine didn't work."
Never mind the fact that these machines have never worked on me ever and I see doctors about ten or so times a year and get hooked up to those machines every time-it must be me, purposefully messing up the machine for them. I tried to warn them and they think it's some kind of self-fulfilling prophesy that I created just to make their job harder.
This is a mild example of what I am talking about. I'm not fitting into a box and they don't like it, so they get upset with me and start blaming me.
One of the bad ones I experienced happened to me last year. I was seeing a doctor and taking metformin for my diabetes when I had a horrible reaction to it. I went to the doctor and they told me I'd just have to go off my medication and wait for the reaction (which was completely disrupting my life and causing me a lot of stress) to wear off. I accepted this, even though it was very difficult, but asked to be prescribed with something new. I wanted to know about my new medication because I was worried about side effects and stuff, so I asked the woman who prescribed it to me about what it did and the risks of taking it. She said she was just a nurse and if I had any questions about my new prescription, I needed to see the main doctor in their office. So I made an appointment with him for a week later.
As soon as he entered the room and saw that I was a diabetic and that my a1c wasn't 100% in control (it was at an 8 at the time, when it used to be at a 13 when I was first diagnosed, 7 is considered under control, so I was a lot closer to the right number than when I started), he started screaming at me. I was still very ill from the metformin and feeling weak and horrible. He kept yelling at me that having diabetes was 100% my fault (both my parents have it, plus additional family members, so it's obviously genetic, but I guess I asked for these genetics) and about how I shouldn't come into his office complaining about medication when I gave myself this disease. (I hadn't complained about it at all, but he was frustrated with me that my old medication wasn't working and that I hadn't started taking my new one. So it must have been that I was just being difficult.) He kept asking me if I ever tried exercising or why I wouldn't stop drinking soda. I don't drink soda, I haven't had soda in years, and I run on my treadmill every day. My husband was there and he argued with the doctor, but the doctor continued to ignore him and lecture me. I started feeling shaky and sick to my stomach. I couldn't breath, I was having a panic attack because of the harsh way he was speaking to me when I was already feeling so ill. So I stood up and said,"I agree with you. I need to do more to help with my disease, but do not talk down to me." I then ran out out of the building sobbing uncontrollably because my panic attacks were so strong that I couldn't take it anymore. My husband was left dealing with a crying mess and holding me for the rest of the day as I tried to calm down.
So on my 29th birthday (and the doctor KNEW it was my birthday, he had all my medical records), he sent me a letter that I had to sign for about how I was banned from his office and needed to get a new doctor immediately. He was assigned to me by my insurance company and they make you wait a month to change doctors, so even though he kicked me out, I had to wait a month for medical care. I was still suffering from side effects from my last medication and didn't want to try my new medication until I had a doctor that could help me if something happened with my new medication, so I was without medication for a month.
I was very ill at the time and very scared. The whole experience was so painful to me that to this day, I get panic attacks every single time I go into a doctor's office and have to be in therapy every week because of it.
Doctors hate people with chronic diseases. They hate that we can't be cured. They view us as a burden. They want cases where they make breakthroughs and can feel good about themselves, instead of watching someone's chronic disease slowly chip away at their body more and more each year. I've had endocrinologists (these are organ specialists, who also focus on diabetes) tell me directly, even though they know I am a diabetic, about how they hate their job and all their diabetic patients because they have to watch us dying all the time and how annoyed they are that diabetics just won't get better from their incurable disease.
I get it, it's depressing and don't don't like to feel helpless when it comes to curing someone. They turn to blaming the person with the disease, so they don't have to feel so terrible about it.
But how do they think diabetics feel having to live with the disease every day and not just treat people with it?
It's hard to be sick and vulnerable with people who view you that way, but when you have a chronic disease, you don't have a choice.
You Worry About Dying And Leaving Your Family Behind
My husband hates when I talk to him about this. He doesn't want to think of me ever dying, but I get scared about who will take care of him (pack his lunches, wash his socks, pay the bills, etc.) when I'm gone. I get scared about who will comfort him when I die. I tell him all the time that he has to remarry after I am gone, not because I want to think about him with someone else, but because it kills me to think about him lonely and suffering.
When you have a chronic disease, you know mortality and how easy it is for you to die. And if you don't, your doctor reminds you all the time. You don't fear old age, you fear that you will never be old. You think of major life events, like having children and seeing them grow-up and wonder if you'll ever get to do those things.
I married my husband because I want to grow old with him, but I know that there is no guarantee. I not only have diabetes, but I already have several complications of it. I wasn't diagnosed until I already had multiple complications. I worry when those complications will catch up with me and take my life. I think about it every day.
Going To Sleep Is Stressful
You're always kind of worried that when you go to sleep, you might not wake-up or that you'll wake-up to find that something about your disease has completely changed in the middle of the night. It doesn't help that I know that many diabetics die in their sleep. Either because they weren't on medication, so they went into a coma, or because they were on medication and didn't wake-up when their blood sugar got too low.
I have some nerve damage on the left side of my body due to diabetes. It feels better or worse sometimes based on how in control my blood sugar is that day. Sometimes I have a lot of numbness, sometimes very little. About a month ago, for some reason, I woke-up and my entire left side was number than it has ever been, including my face. My face is never numb and I couldn't move my mouth right. I was half-awake and I know diabetics are at a much higher risk for stroke, so I started hysterically crying about how I thought I was having a stroke. My husband woke-up in a panic and we quickly figured out I was fine (I probably couldn't move or talk if I was having a stroke), but I was so shaken by it that I had to read and watch television for awhile before I could calm down and fall back to sleep.
Now, when most people get panicky like this, doctors would probably call it hypochondria. But for me, I know if I brought this up to the doctor, they would lecture me about how I should make sure my diabetes is always under control and how easily it could have been an actual stroke if I don't. Most of them will say something about the high percentage of diabetics that have strokes.
It's a lot harder to sleep peacefully at night when your doctors are always telling you all the ways you are going to die (they never make it seem like a possibility, but more of a certainty) and they always have a worried or judgmental look on their faces about your body.
People Make Your Life Into A Joke Or A Warning Story
I dread Halloween. Not for normal reasons. I dread it because I have to count the amount of times someone is going to make a joke, either in real life or on television, about eating too much candy and getting diabetes.
It's not terrible to joke about diseases if the jokes bring humor to a painful situation. In fact, I wish people could make me laugh about my diabetes, that would be fantastic. It's when the jokes are about misunderstandings people have, like how they think eating too much sugar leads to diabetes. It doesn't. They always, always make this joke when they are in the middle of scarfing down something sweet, like an entire cake or something. It's like they are mocking you,"I ate this whole cake and I didn't get diabetes. What did YOU eat to get it?"
The misunderstanding is so common that even doctors latch onto it sometimes. It doesn't matter if you have type 1 or type 2 diabetes. It doesn't matter if you are skinny or fat, if your whole family has it, whatever. If your blood sugar is high, then they think you must have done something to cause it.
My husband once ate a whole bowl of candy for Halloween. I'm so used to how my blood sugar spikes that I wanted to see his spike a little. Before the bowl of candy, his blood sugar was 70. Afterwards, it was 80. His body handled it perfectly. It's because you can't eat your way into having diabetes.
If my blood sugar was 70 and I ate one candy bar, afterwards it would skyrocket to 200 probably. Because a normal person's blood sugar doesn't do this, people and doctors assume you must have really messed up for it to happen to you. Sure, they indulge in cake sometimes, but what they are doing must not be as bad as what you are doing because your blood sugar is so high. Maybe that would make sense if everyone's bodies were the same, but they aren't.
People with chronic diseases don't want to be made into a joke or a warning. We don't want parents to say to their kids,"Put down that brownie or you'll get diabetes." Not unless it is true.
And even if it is true, you don't want your life to be someone else's horror story. You want to be positive about your life, not negative.
Everyone Has An Opinion About You And Your Disease
Telling people about your chronic disease is one of the most difficult things you can do. Because you're afraid of how they will treat you differently. They will often start lecturing or judging you.
With a lot of people, as soon as you even mention your disease, they're going to have an opinion on it-good or bad. They act like they have a medical degree (even though the majority of them don't.) They think they know exactly why you contracted the disease and exactly what you need to do to cure it.
Because I am a writer who uses social media a lot, I get tracked down by people who have miracle "cures" for diabetes. It doesn't matter that there is no cure for it (some people claim they cured their diabetes just because the changes they made are controlling their numbers, but they still have the disease, it's just under control, not cured.) Ask any doctor if you can cure diabetes, they'll say you can't. But because some hippie pseudo-doctor online says otherwise, this must be a lie.
One of these people and I got in an argument on twitter once. He kept saying things about how his magical diet (they're always things like "eat only apples for every meal") cures every diabetic who tries it. I called him out on it because I live with the disease every day. He made sure all his followers knew what a liar I was. He started posting several tweets insulting me and my thoughts on the life I'm forced to live every day. I had to block him, but it's very irritating for someone to be so self-righteous about something you struggle with constantly and act like it's so easy to just magically cure.
It's not just diabetes either. I know a ton of people who think you can cure cancer just by taking the right kind of vitamin. Now, I don't have cancer, but I know this is foolish and I argue with them. Because they might be encouraging people with cancer to do ridiculous things that won't help them, even under the best of circumstances. They are judging people who don't follow their advice, making the disease into something more simple than it is.
You may not think this has serious consequences, but it does. The simpler people make a disease, the more they blame the person who has it. The more they blame people who have a disease, the less they are willing to donate to charities for cures for the disease. The less they donate to chairites, the harder it is to get rid of the disease and the more people die from it.
We've eradicated lots of diseases, including polio, since diabetes was first discovered. But more and more diabetics contract the disease every year. There's also an increase in judgment of diabetics every year. This is not a coincidence.
Another example is the amount of people I've seen mocking diabetics for eating sweets or having candy. Doctors actually recommend that we all keep candy on hand. So if you see a diabetic eating candy, it's not necessarily because they messed up. We don't have candy because we are supposed to eat it all the time, we have it because low blood sugar is very common and kills diabetics quickly. If our blood sugar gets too low, we need to find something that will bring up our blood sugar fast so that we don't die. I prefer juice, but sometimes all you can get is candy. But if someone ever sees a diabetic buying candy, even though a doctor may recommend it, they'll shake their head and point to that as the reason the diabetic is ill.
When talking to someone else about their disease, sometimes it's better to listen and not talk so much.
You Are Put Into Embarrassing Situations In Public
There are always embarrassing or awkward situations that having a chronic disease puts you in when you're in public.
For me, my embarrassing situation usually involves someone in my family or I having to take our blood sugar or give ourselves an insulin shot in public. First of all, whenever we have to do this, there is always guaranteed to be food around us. I'm always afraid that people are going to scream about the blood involved and accuse us of trying to poison all their food with medical waste. Secondly, when someone sees someone using a needle in public, they usually assume the person is taking drugs, not using insulin.
There are millions of diabetics in the United States alone, but how many of them have you seen giving themselves shots or taking pills or testing their blood sugar in public? We're supposed to do those things all the time, but they're embarrassing so we try to hide it.
In some situations, we might even refrain from doing what we are supposed to because it's easier to just deal with the consequences of your disease than face the judgmental stare of others.
You Are Afraid Of Being Helpless And Dependent On Others
This is a big one. Most diseases are degenerative, so you worry about the day when your loved ones will have to take care of you.
It's hard to live with your disease every day. You have less energy than other people, but you always want to achieve the same things as they do, so you can "prove" to yourself that your disease isn't holding you back.
It's because, when you give in a little, and accept help, you're worried that it will be a downhill slide and soon you will be completely helpless.
And we all know how judgmental and mean people are sometimes when you need help. They assume you are lazy, even though you might be seriously ill.
Having a chronic disease is difficult. I do think it's good to be positive about it, but it shouldn't be expected. Even if someone is struggling or crying or not doing all the things they need to do to take care of their disease, they should still be encouraged for working hard to fight their illness every day.
I think we should admit that on some days, for everyone, dealing with a chronic illness is horrible and not pretend that everyone needs to be happy or positive about it.
Share your experiences with chronic illness (or what brought you to this article) in the comments below!