Rant - Chronic Illness Chats
I want more listeners to think about this when discussing issues with chronic illnesses - not really sure where to put this.
I can look at the good things in my life - that's a way of looking at things positively and realistically. When you tell me though that I will get better if I just think positive I feel like you're putting blame on me for being sick - that I'm this way because I wasn't positive enough.
Thinking postitively isn't go to do all that much in changing my physical condition. I can't run a marathon just by changing my thinking. When I'm physically limited in what I can do a thought shift won't change that - don't suggest it will. Then I just get in a situation where I feel like I have to prove that I'm ill - argue with you. It's not going to make me feel better.
I'm not going to be cured in the short term. Stating this isn't being negative, it's being honest. When you argue with me on this I just end up thinking you're stupid. I know what the research is, I have a pretty good scientific understand of the base level to follow it. The probability is that I'm more likely to die than be cured within the next 5 years. That's not being negative, it's understanding the actual probabilities. Being negative would be me saying I think I'm going to die in the next 5 years, there's no point in trying. Acknowleging the truth is different from that. Recognizing these facts doesn't mean that I'm suicidal.
When I say I can't do something, I'm not being lazy. When I saw little things take effort it's because they do. Telling me I'm lazy is just going to piss me off - the effort I put in now is way higher than when I was getting top grades in courses, super involved in various activities and working. Until you know just how difficult being sick can make it to do the survival basics, don't tell me I'm lazy. If you do know how difficult that can make things don't call me lazy - you know it's not true.
Focusing on what I can do and doing a little bit more every day are not the same thing. My symptoms don't improve every day, neither does my endurance or strength. Sometimes doing less than what I did yesterday takes way more out of me than the tasks I did yesterday.
Changing the amount of medication I use week to week is not ignoring what my doctors tell me to do. A big part of what I'm encouraged to do is take charge and decide what I need with some of them.
Stop telling me to see a doctor. That's giving advice. It's also assuming I'm not seeing multiple doctors regularly - which you most likely didn't even bother to ask. I am not connecting to you for medical advice.. I can't pop in for every little flareup. Some things I'm expected to deal with things until my next appointment. This is pretty typical when it comes to chronic illnesses. Lots of times seeing a doctor just puts me a risk of contracting a contagious illness and the doctor knows less than what I know.
Don't ask me for a list of my medications or my entire health history. Again, I'm not coming to you for medical advice. Some of this stuff really isn't your business and I don't feel like listing off the things that I have a printoff for new medical professionals.
@AffyAvo pm me at anytime I totally agree n understand. I also think you are an awesome couragous lady n love evertime you post affy.
AffyAvo- I agree... when the wrong things are said, it can be highly agitating
My personal favorite was being told- "That's too bad' That made the hair on the back of my neck stand up. Of course its Too Bad (Ugh)
@ChromeLotus or "that sucks" lol
@TrueArrow
haha I'll take both of those over 'ok'.
When I get ok I wonder if they even read what I wrote.
@AffyAvo
Huge empathy for you. My partner has a chronic illness and has encountered many of the attitudes you describe. Plus the Christian view of, 'if you trust in the Lord he'll make you better'. If only!
I hope you can find a listener who's less judgemental. I often float by here if you wanted to talk.
@DeborahUK @Justhere2listn
Thanks. I have found good listeners (sometimes some of them even slip in some of these issues - overall good though). I keep with sending general requests out only because often times I'm just looking to chat in the moment. Besides, people should be able to get a listener who is caring. The new ones might not always be the best due to lack of experience, but there's no reason for the stuff I come across quite often :/
@AffyAvo I must admit, I do have a sympathy for listeners as I know they aren't perfect, volunteers and not professionally trained. However, there are no excuses for why they would even dare argue with you. That's just going way too far, along with the many other annoying attempts at trying to "help" that you listed. I know from experience, it's hard to find a listener who can deal with chronic illness chats. Many lack the experience and maturity to understand that chronic illness is not a reflection of something you've done wrong, but in many cases a host of genetic factors for example. It feels condescending and rude when asked if I am seeing a doctor (like nobody who suffers chronically would think of that) or when religion is brought up like my personal devotion to God is not good enough (not to mention how awkward that must be for those who do not believe in God). However, I find that ill worded phrases are born out of not knowing what to say, instead of listening like the site intends.
Thank you for bringing this topic up, I hope it helps some listeners improve on their role when taking chats such as these.
@TrueArrow
Thanks, I hope so too.
I agree sometimes listeners don't always know what to say. They can say that though. I've had listeners to do that before. Sometimes it can lead to some long pauses but at least I don't leave feeling worse off and there's a certain level of understanding for each other.
@TrueArrow I started a blog about what its life from a friends persepective and my personal struggle with accepting her the way she is now and how we are helping each other https://www.friendsofchronicillness.com
@FriendsOfChronicIllness I read it, it's beautiful. If I was your friend, I'd be very happy and proud of you. I know dealing with a friend who is chronically ill is rough but I'm glad you both are able to be each other's comfort when she is able to be there. I really like the way you spoke about your friend, it showed the reality of the situation and how hard it is to see her this way but you also show that you care a great deal for her as well. Please continue to write. 
Well said. As a listener with long term conditions and chronic pain. I would likely share your irritation. Thanks for educating others to something so difficult for others to conceptualise.
@AffyAvo I think it's unintentional ableism and yeah it hurts. The only one that can say what you can and can't do is you. The only ones that needs to know your medical is your and your doctors. That's private. I'm not sure if there is a course on 7 Cups yet for understanding how ableism affects us in the chronic illness community, but it definitely needs to be looked at.
Thank you for writing this post and helping bring this to the attention of some of the listeners. I will see if I can get someone to work on this soon.
Hey I have chronic migraines
@AffyAvo I have started a blog about what it is like from the perpective of your family and friends
@FriendsOfChronicIllness
I liked that you shared that, but sadly I had to remove the link due to the potential for off-site contact.
I'm glad you have such a close friend and that you two support each other the way you do!
@Affavo it's brilliant that you r sharing this, a few listeners I had haven't understood @chronicpain and iv left the chat feeling worse than I started unfortunately.
@PainNogain88
I'm sad that others can relate to this issue with some listeners.
I hope you've found some good ones too!
@PainNogain88. I feel the same way. As a matter of fact I've felt demeaned and spoken down to. Does not feel good. She TOTALLY doesn't get it.
@yzzil Sorry that happened to you too.
@AffyAvo
It's frustrating but I honestly don't expect much from listeners, especially new ones and those who haven't specified chronic illnesses on their profile. So many doctors/nurses have never heard of my conditons so I don't expect them to know a thing! Some people may say the wrong thing, but you know that they mean no harm and have good intentions behind what they say, so there's no need to give them a hard time. People say "I hope you get better soon" and obviously I know I'm not going to get better, but I just take the sentiment of them hoping I feel better at some point.
Before I was diagnosed with my conditions, I would probably say exactly what they say. I didn't have a clue so I really can't blame them.
@MythologicalMayhem I do get what you're saying.
I wish we could expect more from listeners than what is typical. I wouldn't include knowing about my condition into that though - that's expecting way too much.
This rant was more about the entire conversation. Some of the things I've mentioned above have happened in isolation with good chats.
There's also the tone coming from the other person. It's one thing for someone to say I hope you get better soon. It's another when I talk about the frustration of dealing with a chronic illnesses and the things I forgo because of it and being don't oh don't think like that you'll get better!
As for acusations about abusing my medication or not following my doctors' orders - I don't even see how a listener thinks that will help establish an empathetic conversation
