Chronic Illness Truth #13
How many of you feel like you spend half of your life explaining your illness to people who don't believe you?
Let's be real here, a lot of us have experienced reactions from people about our illnesses that often lead to negative thoughts about ourselves and our struggles. I've often found people making the above comment after I've already explained my illness to them multiple times. Either that or it's usually followed by silence, lack of knowing what to say, repeating the words: "I'm sorry" or the famous line of: "I can't even imagine!" While all of these are not necessarily offensive things to say, they can make someone who's already struggling enough often feel like they're just a massive burden or like they're just crazy.
If you respond with a statement about how you didn't know when I've already opened up to you about it, it tells me you weren't listening or you didn't believe me. If you respond with "I'm sorry" followed by silence I often feel guilty for talking about it at all because I was never seeking for sympathy.
So what is the chronic illness community looking for as a response? Well, first of all, I understand that nobody is truly going to understand what it's like unless they've been through it themselves. But you don't have to completely understand to offer love and compassion to someone who is suffering.
When I trust you enough to talk to you about it PLEASE LISTEN. Follow up "I'm sorry" with reminding me that I'm not alone, I'm loved, and I can do this. Offer words of encouragement and hope. I need somebody to fill my painful space with love and compassion, not rejection and astonishment. May we all try harder to respond to anyone's struggles with greater kindness and love.
Comment below if you relate how you would like others to respond when you open up about your illness!
Hello, I was reading an article you had written so I came to your blog, and then to this article...I don't have Lymes, but I do have a Chronic Pain Illness that will never go away, it will get worse as time goes on...So yes, I have tried to explain to family (those close) my Illness and mainly how it will affect me and the social aspect of it..Mainly when I'm hurting, don't count on me for social functions unfortunately. I was doing a lot of cancelling and they needed to know why. So the first reactions I was receiving was good hearted advice on what I should be doing so I don't hurt anymore. Walk it off, Exercise more, the medicine the Doctors give you are going to kill you, smoke pot instead (that's a good one as I have COPD as well) ..Too explain more fully my condition , I have Chronic Fatigue (sleepiness and weakness can hit you at any moment, last an hour to a week so far at times), Fibromyalgia (chronic pain everywhere, sometimes it is horrible for me when you want to hug me but to me it's so very painful) IBS (going out to restaurants is okay as long as you get me home in 15 minutes after eating please) COPD.(no, a walk is out, I don't have enough breath for that, please understand just walking around my place sometimes is to hard) So what does DOES HELP ME? Keep telling/inviting me to functions/get togethers but don't be upset if I am a no show...I promise from the last minute, I'm trying to get there, willing my body to please let me have this, we can rest later.What helps me when I'm having a bad day and am talking about it, just let me talk and remind me that thankfully it's not everyday that I feel this bad. Ask if I've been able to fix a meal for myself, probably not....just offer to take my money and go and get me something to eat is a huge help. With the medication it is important to have food in my system and if not my stomach burns, not pleasant. Well that probably does it for that....BUT I ALSO WANTED TO TELL YOU the article I was reading was about you breaking off the wedding...You were correct in doing so, especially for such a young man to be opening up into that world. Like with the news, movies. The more we see of horrible things we become immune to them. Meaning they become less icky, less traumatic the more we see. So with porn, we become less interested in our partners physical beings because it's all there on the screen. Then the PG versions become boring, so they seek out more R rated, more perverted acts until they progress to X and XX. All the while any physical relationship with their spouse has almost disappeared. Their spouse feels ignored, then it starts to make them insecure that their spouse would rather have a screen show vs the real thing. If the spouse says they will quit, they don't, they just hide it better. They want you to join in, which is usually you in there but they are still staring at the screen, you might as well be not there, makes you feel nasty in ways you never thought you could feel. SO YEA, YOU DID RIGHT, GOOD FOR YOU. I just wanted to tell you this more than anything.
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