Things You Should Stop Saying to your Chronically-Ill Friends.

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I have compiled a list of things I have heard over and over as a chronically ill person and that I know other sick people also hear quite often, because we sick people chat about this stuff.

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But first I want to say...

We know that you mean well, that you want to help, and that you frustration is based on not being able to help. We want to feel better too but having people constantly doubt us, invalidate our feelings, and get annoyed at us for not being able to participate fully isn't going to make anything better. All we probably want is someone to quietly listen and acknowledge our situation. So, just try to resist the urge to "fix" us. I guarantee you that we are working at this 24/7 and have more qualified individuals to help us try to alleviate our suffering, such as doctors. Although, I don't have one yet but that doesn't change that a friend who knows nothing about my interstitial cystitis isn't going to be able to fix it. I can't tell you how many times I have to fight off advice to do things like drink more water or cranberry juice which causes flares. So, just be a shoulder if we need it or an ear but don't play doctor. It only frustrates both parties.

• You don't look sick.

Yeah, many of us don't "appear" sick. If you looked at me you wouldn't be able to see that my bladder causes me to pee 20-60 times a day and causes my to wake up all throughout the night, exhausted to go to the toilet. You wouldn't know I have burning and pain comparable to a UTI 24/7 relentlessly and have for years. This same concept goes for many invisible illnesses. Just because you can't see our sickness doesn't mean we aren't sick.

• You were fine last year/last month/the other day.

Some illnesses give us good and bad days. I personally haven't had a good day in years but I remember when I did and it would often cause people to invalidate any bad day. The fact that we were active, laughing, and able to participate at some point in the past has nothing to do with how we feel now.

• You should stop being so negative.

I hear this often when all I am actually being is factual. I will say that my disease has caused me to be socially isolated and unable to be active like I used to be and, yes, this can cause some depression. I have lost friends over saying these things. Friends who told me to think more positively. Being positive is great but don't tell someone who is in debilitating physical pain that they need to stop talking about the facts regarding their pain. What you are viewing as negativity is just our every day life. We are just being honest about our health and limitations.

• If you really wanted to do _______ you could just do it.

This is sort of related to the last one but not quite the same. I mentioned one particular friend in a blog awhile back you told me to just walk outside with a cane if I needed to but that I was an adult and the only thing standing in the way is myself. The cane comment showed she actually knew nothing about the nature of my disease. I can't go out. Trust me I try and try and try and come home after 20 minutes sobbing because all I wanted was an outing. Don't tell me what you think I am capable of because me and my body know better.

Oops, got a bit self-centered there but keep this in mind with your sick friends. Just admit that you don't know what they are fighting and you can't tell them what they are physically capable of doing. Which leads me to my next point...

• Don't compare their illness to your completely unrelated illness in order to demonstrate how they can cure themselves like you did.

This is completely ridiculous but happens all the time. It's just people trying to relate but also often used to dismiss people's health issues. I overcame _____ so you can overcome _______. No, that doesn't work that way. If a guy who is losing a battle with cancer has a neighbor who overcame back injuries sustained in a car accident. The neighbor telling him how he overcame it isn't going to change what's going on with his body. And I am not saying it isn't okay to share stories of how you overcame your own issues for inspiration. I am only saying don't use it to dismiss what they are saying. Like a person telling me I can go hiking again if I want to because they couldn't when they had leg issues but now they can. That is unrelated.

• Don't guilt your sick friends for being physically or mentally incapable of meeting your desires.

If your sick friend is on meds that make them groggy and sleepy and they say they are going to need to just sleep for awhile, respect that. And if their physical pain is too much to go to the event you'd planned try to be understanding. They wanted to attend and are probably hurt and frustrated that they couldn't so try not to guilt them or get angry at them for not being able to keep up.

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And that about wraps that up.

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That actually about covers it. As everybody knows here I have been sick for a long time and yes I know it can get old hearing about it but this is my every day, there is no variation. And, trust me, it is more awful having to deal with the pain every day than hearing about it. If anything, take it as a message to enjoy your body and health if they are on your side. But understand while you are out and about, moving freely, socializing, working with your body there are many people like me, stuck in a room, unable to live their lives and they will probably talk about it a bit too often. Try to be patient. But also feel free to share *your* feelings and set your boundaries.

I am learning to not talk at my friends about my issues quite as much simply because it never leads to anything good. I now blog about it as a release and post on support forums. Those get a bit depressing though. I think blogging to raise awareness about these health issues is the best way to release some of these feelings for me.

And one last time, I really do know how many people mean well when they say these things. I am just asking you try to put your foot in the other shoe. Try to REALLY take in day to day life with a body that barely functions. The things you could no longer do, the isolation, everyone getting annoyed at you if you talk about it. Just try to go there for just a minute and then maybe practice just a bit of empathy and patience toward us sick folk? :)

Also, if you are frustrated with the amount they talk to you about their ailment set boundaries. Don't simply listen and act like it's fine and then let the resentment and annoyance build up until you explode. It is crucial both parties try to be empathetic toward the other person's needs. So, your feelings matter too. Make them known. Just don't express your frustration by exploding.

Sorry for how often my content is related to illness but I feel I have a platform to maybe make some people think about things they haven't considered. I know before I was this sick I never really thought about the life of sick people too much.

I made a new cartoon Lemons to put on my IC related posts. hehe