Being chronically ill is depressing and isolating. You’re out of touch with everyone else, managing your daily needs can be a chore and if you’re illness is severe enough, the very idea of getting up and going to the bathroom can be a feat in and of itself.
I am still part of a support group over on Babycenter.com for people with HG (hyperemesis gravidarium) and many of the women over there don’t have any real life support. Their friends and family don’t know how to deal with them, don’t know anything about this disease or don’t want to, and generally ignore or are passive aggressive towards the ill person.
I’ve experienced some of this and it hurts. A lot. When the people who love you or, who you thought cared about you, don’t seem to want to have anything to do with you when you’re going through a bad time, well it can be damaging.
When I first got sick, I had hope that it would end at four months. Once that didn’t happen and the sickness worsened, I began to get depressed. Between hormones and the feeling that no one understood or cared or that I was somehow being punished, every day was a trial.
I don’t usually ask for help. But I told my friends and family that I was sick and what I had wasn’t just normal morning sickness. It wasn’t going to go away, adjusting my diet wasn’t going to help, and simply putting on a happy face wasn’t going to make me well.
I was lucky, I immediately gathered a support group. Not through anything I asked or wished for but simply because I was immensely lucky to have certain people in my life who cared about me and my health enough to support me through this. My husband is one of them.
It was trying to get certain family members to understand what was going on. I came up against a wall. They either didn’t want to know or didn’t care or in some cases thought I was making a mountain out of a mole hill.
That hurt the most.
Some of the women I’ve had the pleasure and privilege of interacting with have had it much much worse. Their HG, more severe than mine, confined them to their beds and made them slaves to the vomiting and nausea that consumes us all.
No one knows much about HG. It is a disease. It’s a chronic illness with varying level of severeness but with one thing in common. There is no cure. There is a chance of a respite and there is always a chance of a relapse in the worsening of symptoms. I have a mild case. If I get pregnant again, there is a very high percentage stating that I will jump from mild to medium or severe.
It’s hormonal and it’s chemical and that’s only the current theory.
I’ll tell you what it is though. It’s a scary and unbiased beast that will attack and keep you pinned down even while you’re screaming “Uncle”.
It can shutter you in a dark place that exists only in your own mind and create such a siphoning void of exhaustion and despair that depression is the only option.
From weeks 28-39 the HG slammed into me. Vomiting, extreme fatigue, headaches, horrible nausea, dehydration and just general irritability. At around week 31, I started shunning my support group because I began collapsing into myself. I didn’t want to talk to anyone. I just wanted to give birth. I just wanted relief. I would’ve done anything. In fact I did. I did accupressure, I walked, I walked some more and did more accupressure. Anything to feel like I was doing something.
I leaned more on my internet group because I didn’t have to talk and they knew, more than anyone, what I was going through. Reading their stories, telling mine, got me choked up a few times.
I was also lucky and had people that educated themselves on what was going on with me. For that I can’t help but be very grateful. However, the truth of the matter is; the only people that will ever know, with 100% clarity, what you’re going through are the ones that have gone through it or are going through it.
This is true for many chronic illnesses. I will never understand what a cancer patient or AIDS goes through because I have never had those illnesses. I can relate to some of their feelings but I can never fully understand.
But you know what, sometimes all a sick person needs is understanding.
From my own experience I can safely say that the people who will stick by you are the ones that will help you up rather than watch you lie there.
But here’s the thing folks, being a caring and thoughtful person costs nothing and if you’re not the caregiver or in the support circle, then NOT being a dick should be easy peasy.
Based on experiences seen, heard and experienced, I’ve compiled a few tips on how to not be when your friend or family member is sick.
1. The sick person is sick.
They aren’t making it up and they aren’t exaggerating. Never tell a chronically sick person that they really aren’t sick. This is rule number one. You my friend, are not a doctor and apparently you are not close enough to the patient to know what’s going on. This is strike one and a pretty major one. You’ve basically declared that your friend/family member is a liar or a drama queen and you don’t really trust them.
Welllllll…here’s the thing. A doctor or hospital has diagnosed them. The pills next to their bed are real and the schedule that they are on to ensure they don’t get even more sick is important and real.
HG might not be understood but it is real. Your loved one is not lying.
2. Research is the best defense
There are a handful of sites that deal with HG and only about two that are official and offer an in-depth description on HG. Helpher.org is one of them. They too have a FAQ on how care for a loved one who is ill.
This doesn’t just apply to HG here. There are tons of diseases that are confusing to a person who doesn’t have it and like helpher.org, there are also tons of organizations that will explain and offer tips on how to help.
If you are armed with the knowledge of what the disease is, what treatments are being done and what options there are, then you are making great strides in not be a jerk. It shows that you care enough to know what’s going on. You get bonus points if you didn’t have to be prompted by your sick friend to check out the illness.
3. You don’t have to be the caregiver, you just have to care
A phone call, a text, an email, a smoke signal, maybe even carrier pigeons, anything that makes the sick person feel like you took a minute to say, “Hey, are you ok? I’ve been thinking about you.”
If you honestly care about the person, it costs you nothing (except for standard fees where applicable) and gives your relationship an extra boost. It also gives you +5 charisma.
4. Talking about the sick person behind their back makes you look awful
And it will come back to haunt you. The sick person is sick. If you are not the caregiver or the nurse, you shouldn’t be bad mouthing the sick person. Unless you really are a dick. In that case, why are you reading this? Shouldn’t you be on reddit?
5. Do not offer advice unless you absolutely know what you’re talking about
The sick person has heard it a million times. Try resting more, drink more water, eat some dry crackers, bathe in the blood of a newly born calf that was born under the eighth moon of the eleventh month yada yada yada.
Your job is just to listen. Ask questions or keep the sick person cleverly diverted. Unless specifically requested please shut the hell up with your pseudo-science advice. You look like an idiot and the sick person, if they could, would most likely punch you in the mouth.
There are plenty other nuggets of advice, ranging from not commenting on the sick person’s appearance to not asking if they are STILL SICK (because they are fully aware of 1. what they look like and 2. the length of their illness).
All you need to do, as a loved one, is to love the sick person. Don’t isolate the sick person any further, keep them updated via email or text. Invite them to places the first month just to make them feel like they haven’t dropped off the face of the planet. Respect their decisions. Don’t argue with said decisions. Make yourself available. Don’t promise something you can’t commit too and above all; be understanding.
It’s not easy on anyone when there is an illness involved. It directly affects the sick person and the caregivers. As a friend, you should ask if there is anything you can do. Not what they can do.
Just. Don’t be a dick.
*thanks to the ladies on the HG board. You got me through many a months. You are all warriors.