Living with chronic illness is already a big issue in itself, you are frequently suffering from some sort of chronic pain or disability that stops you from working on your regular activities, Trust me! it drastically changes your life.
During this hard time, the last thing you want to hear especially from someone who already knows you are sick and aware that you have a chronic illness is an ignoramus and in some cases cruel remarks.
When I was a kid I got bullied quite often most of these came in the form of insults at some point one just realizes that you have to ignore all of this, and up to this day subscribe to this idea, there is just an overwhelming amount of ignorance out there that you just have to deal with it ignore it. The problem however begins when that person is someone close to you or someone you care about. when it hurts the most, when it really matters, this is should be our main concern.
Most of these comments are not maliciously intended or with intention of hurting someone most of these come out of ignorance and also never experience the same difficulties or the same suffering the other person is going through, although for this last point some people argue that you don’t need to experience that you just have to be educated, when it comes down to it because we are emotional creatures we tent to remember better with emotions (Jim Kwik mentions this a lot on his videos and on his podcasts).
Let’s examine some of these “remarks” so you can get a better idea of what I’m talking about.
The potential “boyfriend“
I wanted to put the potential “asshole” there you will see why.
So there is this young lady from a Ted Talk, she had epilepsy her partner was already aware of her condition, unfortunately, she had a seizure while she was dating him, she fell flat on her face for 2 minutes that experience as horrible as it was, it was almost as horrible as the answer she got from this “gentleman” and I quote he said:
“I don’t see a third date happening here”
Can you believe that? Stop here for a second, so just imagine falling flat on your face for 2 minutes your body shaking and making movements outside of your control, now that is scary isn’t it? Imagine if that happens to your mother or someone that you love, and someone just makes this “remark“.
Remarks like these are as cruel as they can be, yet these are the kind of remarks people with chronic illness have to deal with on a regular basis.
The unsupportive family
There is this other case from this lady Ally from this great book:
“Surviving and thriving with an invisible chronic illness” is a book I highly recommend.
She was diagnosed with “Intracranial hypotension” She was having her head drained of spinal fluid day after day. (You felt the pain just reading that didn’t you?)
She got good and friendly support from her friends and nurses at the hospital where she was. It is nice to see when nonrelative people see through your problem and try to help.
Unfortunately, her family was unsupportive, to say the least.
The comments she got from members of her family were harsh. In the beginning, they thought she was faking it (if you have a chronic illness you know what she is talking about) despite the fact that she was vomiting having dizziness, and having balance issues.
When you have a chronic illness, especially at the beginning of it people think you are a hypochondriac. It sucks when you are not being taken seriously by loved ones!
These were the kind of comments she had to hear:
“I wish I had headaches so I can stay all day”
“If you wouldn’t pass out all the time I wouldn’t be embarrassed to go out with you”
These are the kind of remarks someone has to hear on top of dealing with the disease.
We are not asking for special treatment we are asking for basic human decency if you can’t help the situation don’t make things worse:
“Don’t bring the morality down”
“Don’ make the situation worse than it already is”
“Don’t be cruel”
To sum up:
“Don’t be an asshole”
If you are careful with your comments you will not cure the disease but you will help tremendously with moral support which is a lot already, but here is where this gets better you also help to fight the disease believe it or not?
Is this claim over-exaggerated?
How? You may ask?
Stress, mental well-being, and anxiety are some of the words you are looking for my friend.
As you should be aware by now stress is highly associated with multiple diseases and its contribution to making situations worse in most of them (high blood pressure, heart issues, diabetes, asthma, and athirst) and the list goes on and on.
There are several studies and data on this subject:
https://www.webmd.com/balance/stress-management/effects-of-stress-on-your-body
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286362/
https://www.nature.com/articles/nrcardio.2012.45
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5476783/
Somebody who is constantly being exposed to ignoramus remarks such as the ones I listed above from loved ones or people close to you, gets frustrated, IT REALLY GETS YOU!!
However when it is people that you love conversation is all we have:
If you have a sick loved one seeking support
If you are reading this and you are the person who is close to someone who is very ill talk to them try to find ways to help, it is hard sometimes to think that someone is really ill when you can see them walking with all their extremities.
We only assume that someone is really sick if he is bleeding a lot, showing a big tumor or something really shocking is on his body or is clinically diagnosed with cancer. Other than that he is fine.
But when someone keeps complaining of the same problem over and over time and time again, then we have to be more open to the idea that we may be dealing with a serious issue, not just a sign of weakness or a psychological problem (obviously this last point has to be evaluated by a health care professional).
If you are sick, seeking support and not finding it
If you are reading this and you are sick and not getting much support from loved ones or not even neutral but quite the opposite getting harsh feedback and hostile treatment.
Here I have a few tips that may help you out:
Firstly, conversation is always your best tool available.
This goes quite personal but this piece of advice is very useful, on my personal journey at the begging of it I was treated with incredulity not just by family but also by doctors
what I found, later on, is that I was not good at communicating my health problems.
I was quite generic when trying to explain my symptoms to my doctors or love ones:
I feel discomfort here, I feel something wrong on my chest, and my stomach feels different than before.
The doctor will go and say “so you see those things are feelings” but nothing serious : (
You have to be more precise than that:
What sort of discomfort? Pain? Pressure? Numbness? Stomachs issues? Pain, what sort of discomfort? Nauseous?
Be precise be clear with your symptoms and communicate better your issues.
So one of the keys is to educate yourself on your disease so you are able to transmit better your ideas to your doctor and those who you are seeking support from.
The good thing about education is that right now we have so many places to check for information and get better data about what we have.
Talking about online places, seeking help online, in her book she also describes how sharing her journey online help her to get the support she was looking for. She found good and friendly support. Finding out friends that have the same issue as you are much easier these days than before. Do some queries for :
“Chronic Illness” + “support groups online”
“Chronic Illness” + “support community” + “The place where you live”
You can get physical locations close to you so you can go visit these places and talk to people face to face. Or you can do it online.
If you are more tech-friendly there are Facebook groups, Reddit and Discord Groups, etc for people with similar issues.
Be kind, be cool and be supportive of those who need you in the toughest moments.