What it means to be chronically ill

I am sick.

And I don’t mean the, I have a terrible cold that I just can’t shake sick. No. I am
chronically ill. There are a lot of things that I can do to make it better, to make it not hurt so much, to increase my ability to live a “normal life”.

But some part of me will always be sick. No matter how hard I try, no matter how much effort I put in, no matter how many healthy things I accomplish, I will always be sick.

I’ve been sick for quite some time. Let me paint a picture of my illness.

My illness does not have a name. Not an all encompassing one, anyways. I have been diagnosed with several things: Irritable Bowel Syndrome (basically a label for, we don’t know what’s going on with your digestion, but we know that something’s up), Irritable Bladder Syndrome (same deal as previous except with bladder), Food sensitivities and allergies (don’t get me started on those, that is a whole different series of blog posts),
Hypothyroidism (if you don’t know what that is, look here for an explanation, Major Depressive Disorder, Severe Complex Post Traumatic Stress Disorder (basically means that it originated from a string of events instead of a single event), Social Anxiety Disorder and Panic Disorder. When I was younger, I would have periods that would last up to 2 months, frequently sending me to the hospital. I’ve got that under control, though that time of the month is still completely awful for me, it’s something that I can manage.

Now that you’re aware of all those labels, let me paint a picture for you of my actual illness, the one that affects my entire life and every part of me. I think I first new that I was sick when my periods started at 14 and were nothing like what I was told periods were supposed to be. They were long, painful, extremely bloody to the point where I would sometimes pass out from loss of blood. I went to the hospital about once every 6 months because of them. I knew this was irregular because none of the other kids around me had the same issue.

Being that I grew up in a suburb, where everyone was trying to compete with each other, and being that I had already gone through a lot of traumatic experiences to completely distort and warp the way that I thought, I blamed myself for being sick. I knew that I had done something to deserve getting sick and how could I? Now, before you start telling me that I don’t have control over something like that, I know now that I did not choose to be sick. I did not inflict this on myself, so how could I blame myself for that?

To some extent, I still hold this mind view. It is entirely frustrating because logically, I
understand that I did not do anything to make my friend do poorly on their test. But emotionally? It is completely my fault and how could I be so terrible to do that to them. Emotionally, I am the worst person in existence and deserve every bad and terrible thing that has happened to me. Mind you, I don’t have any evidence to back this up, but that doesn’t matter.

Let me walk you through a day in the life of being a sick person. Once a week, I go to therapy, which is incredibly expensive and even going to it makes me feel like I am a
financial burden that only costs money and never does anything good. But I do everything that I can to push past that, because I know I need therapy. I cannot work through this on my own. I have tried and have only been able to get so far. And then, there is the cost of medication. I have about 5 prescriptions that all cost quite a bit of money, but I need them in order to function. And with mental medication, there’s no guarantee that I’m on the right one. In fact, I think that one I am on now is causing my panic attacks to increase. I am now up to 4-5 per day.

So I go to therapy and panic because I just dropped over $100 to fix a problem my brain is telling me that I’ve made up. I start to panic, thinking I’m just a bother to my husband and never help him. I don’t have a “real” job, I work from home doing freelance assignments. The income fluctuates, sometimes there’s a lot all at once and sometimes there isn’t any. But the last time I tried to work a “real” job, I ended up in the hospital, and then got fired, which caused me to get borderline suicidal (don’t worry, I’m not in that place now).
Working from home is something that I can actually do and is not generally looked down upon, so long as I look like I’m actually accomplishing something.

A panic attack is not purely mental. Your body responds to it as well. You start hyperventilating, no longer taking in air. Your heartbeat rapidly increases, you start shaking, you can’t think straight, you are literally unable to see reason. Until you can get your breathing under control, things that oppose the panic, the reason that you got there in the first place, do not get through. It’s like something takes over your body and doesn’t let go until it’s good and ready.

My physical conditions often put me in a state of constant fatigue. I sleep anywhere from 8-12 hours, lately no less than 12 just in order to function at a semi-normal level. Even after I’ve slept to the point that I feel I need, I feel exhausted. My brain doesn’t work the way it’s supposed to, I can’t focus. I can usually get between 2-4 hours of work done (whether that’s working on writing projects or doing freelance work, it doesn’t seem to make a difference) before my brain stops functioning to the point where I’m literally not able to keep working. My diet is incredibly restricted because of my sensitivities and allergies, but because I have so many issues I often ignore that and eat them anyways. I don’t want to be seen as a freak, or get embarrassed by not eating what everyone else eats (thank Social Anxiety for that). With Social Anxiety, if I even think that someone is judging me or thinks poorly of me for whatever reason, I will have a panic attack.

This is about an average day for me lately. Some days are better, and some days are much much worse. But I am sick. I  am horribly sick, which means that I cannot really live a “normal” life. Somedays, I want nothing more, I just want to be accepted as a person who is trying literally to the best of their ability. And my disorders make me think that
everyone around me is judging me, that they feel like I should do better, or that I’m
making all of this up just to get attention.

I guess you could say that’s my point in all of this. I want you all to understand that even though I am sick, I am trying just as hard as everyone else. Please don’t think less of me just because I can’t do what you can do.