What Not To Say To Someone With A Chronic Illness

The guilt of being home is horrible!! People don't get it!!

“You’re so lucky that you can sleep so much” yes I absolutely love wasting away 2/3 of my life in bed

When I was first really sick I had initially lost a lot of weight and kept it off for a long time because of restrictive diet due to illness. One thing I've gotten quite a few times is, "I wish I had a chronic illness so I could be as skinny as you!" No. No you don't. Things like this really show that people just don't understand. Thanks for making this video!

Here’s another one for the comparison topic: “at least your not dying”. Yeah well, sometimes I wish I was. Pain hurts. My joints burns. It’s hard to hold my brother. It’s terribly challenging to do stairs. (I have POTS. Postural orthostatic tachycardia syndrome) it’s hard to walk home front the bus. It’s hard to go on long car rides because my joints get stiff and hurt more. I am not trying to complain. But comparing is, for me, one of the worst things you can do. It’s very invalidating, and hurtful. It makes me feel like all my struggle is not important. That’s my rant. That doesn’t mean that anyone else feels like this. And if anyone does identify with this. I empathize. I never say I understand because I don’t. We may have similar or the same condition but that doesn’t mean we experience the same challenges.

Amen! I have fibromyalgia and the number of people that have said it's in my head or that it isn't a real illness is easily in the double digits. Thank you for spreading awareness, Mandy!

I've gotten "are you feeling better? You look better! They ask excitedly at church... I feel bad saying no. It's like they think I have a one week cold lol. Thanks for the video Mandy! Praying for you!!

I have cfs and right before I got diagnosed I had a doctor say “yeah my teenagers hate getting up in the morning too” and proceed to just call me lazy, this was after telling him all of my symptoms and telling him how much I loved running about and how energetic I used to be and now I cannot do any of that, it still affects me to this day and I get paranoid that I am just being lazy but then I do something that your average person does everyday and I crash and then I’m like “oh yep, there it is, definitely chronic illness”

I know a biggie for me was "You're focusing too much on your sickness and not enough on God's goodness"...I mean, I believe in living and walking by faith...but that is definitely hurtful to hear sometimes! When you have very real symptoms it's really hard to ignore it. I think acknowledging your symptoms, but still choosing to believe that God is good and that He wants you healed was more realistic and even MORE faith based...like even though I literally feel awful right now, I'm still going to run to Jesus through the pain. haha not sure if that makes sense...but it's helped me!

One thing all of my coworkers always say to me when I'm not feeling good is, "I hope you feel better." With an autoimmune disease it's hard because I want to feel better, but I know deep down inside it won't happen overnight so it always makes me a bit sad (well that's just me).

I've been sick, mostly undiagnosed, for 6 years and my family still gripes to me about how I should get a job or complains when I leave a dish in the sink. They can't understand what it's like to be in a state of constant pain, fatigue, and weakness, and still look "normal," which is ok because you really can't expect them to. You have to experience it to understand it! What hurts is when the people you want to understand you so badly seemingly forget entirely that you're struggling so much on a daily basis. What you said is so true, we don't want/need pity or to be treated like we're inferior in some way, only to be asked how we are or how to help us without the intentions of trying to FIX us. A little love goes a long way! I know my family and sometimes my fiance get frustrated that I can't just snap out of it by eating better and exercising, it's so hard to watch someone you love suffer and not know how to help them. That's why we each have to express the best way to help us to the people we love, they already love us but may not know what we need!

The worst thing I got was "you are just depressed" and it was from a primary care physician. Not even a psychologist. She completely ruled out all my symptoms and pushed me out the door. I still get upset at the memory of it. I did see psychologists too and they even agreed with me that something else was going on. Kind of wish I could find that doctor and show her proof that my chronic illnesses CAUSED depression, not the other way around. But deep breath something to let go of, haha.

"At you are not dying" Im not really living however

This is such a good video, Mandy. My famous line is: "I don't want pity. I want understanding.' I do worry people will consider me lazy when I can't do something. I have one thing to add =) It really upsets me when someone uses my illness as a way to push whatever product they are selling because whatever it might be will no doubt be the answer to all my problems. That bothers me because it implies that I'm sitting here helplessly not trying to find the answer. Anyone with chronic illness doesn't stay in it because they want to. They don't have a choice. They long to do all the 'normal' stuff in the 'normal' way -- the very things that most complain about. I'm just coming out of a two-week flare from lifting my granddaughter out of a baby swing. So, all that being said--thank you again. It really feels good just to be understood and I won't even jokingly tell you, 'I know how you feel.' But I will say that I'm praying for you and I pray for God's mighty healing hand to take away your pain, and restore your health fully. I'm pulling for you!

Ah, "But you don't look sick." 'It's almost better to be told "you look like s***" because you can always reply "Yeah, because I feel like s***" And maybe they'd begin to understand.

I can really relate to everything you said! I was diagnosed with CFS over a year and a half ago and have been housebound since then. I hear " well, you look good". I sometimes feel alone with this illness.

My mum has ME and for the first few years she was really bad and had no energy to cook and me and my sister were 10-12 years old so we didn't know how to cook so we got a lot of junk food that didn't take much to make and my mum gained a lot of weight and everyone just sees her as a fat lazy person instead of someone with ME. From the past year she has been loosing weight and eating healthier and she's slowly getting better even though she has those days where she has to rest but I'm happy she's managing it.

Truth! I have had chronic osteoarthritis, sciatica, herniated disc issues for 11 years and can barely function. I have to file for disability and move to NV for a drier climate. I'm only 43. Sucks big time.

“you look sooo much better, i’m so glad you’re doing better”—this is the absolute worst thing to say in my opinion 🙄 yes, yes yes to all of this. thank you for making this video!

Thank you so much for doing these videos. I am a retired pastor and my wife has CFS. I am so thankful we are retired and I can devote my time to serving my wonderful wife. I'd really like to be able to exchange thoughts with James as I'm sure he is a lot like me, I would gladly trade places with my wife. The spouses have issues to deal with also.

In my experience, most people I have known who have a chronic illness and still work do so because they feel they have no other choice, not because they feel up to it. I have a friend with Chron's and she recently was able to quit her job and stay home with her little one. What a blessing for her! So thankful.