Comments on: Understanding Your Friend with a Chronic Illness

By: Mary E. Norton

Mary E. Norton — Wed, 11 May 2022 13:46:41 +0000

In reply to Leah (Burnett) Bryan. Thank you so much fir this article I is a great comfort. I have Lymes Disease but also an allergy ti Sulfa found in Our tissues. it us also found in beef turkey beans brussal sprouts, Milk, Quinoa!It made my life very bad month if May 2022 I have other tins if food allergies.

By: Amy Keim

Amy Keim — Wed, 15 Aug 2018 04:29:46 +0000

In reply to Leah (Burnett) Bryan.

Leah, I LOVE this! I think I could write a whole ‘nother article just based on what you’ve said. So many wonderful points, and articulated so beautifully. It’s so true — spouses end up dealing with the brunt of our issues so often, but people don’t always recognize that and realize what a huge responsibility it is. My husband has been my lifesaver in every way, and I know yours has as well. And I LOVED what you said about people not believing you, making you wish you’d never said anything at all. I’ve experienced this so many times! Just because someone can’t see something or it doesn’t make sense to them, that doesn’t mean it’s not real. It is, it’s not just in our heads, and it is scary and painful. I’m so sorry you’ve had to deal with these horrible health problems! You are a beautiful person, inside and out, and I’m so lucky to know you! I hope things get better for you, health-wise, and that you can receive the medical attention and help you deserve. Love you!

By: Leah (Burnett) Bryan

Leah (Burnett) Bryan — Tue, 14 Aug 2018 07:00:41 +0000

Amy, this is a great article! I super appreciated it!! Since getting married I’ve had some crazy health stuff. It started a couple weeks after marriage, but basically I was passing out around four times a day for no apparent reason! It took 22 months of every-type of Doctor and a million medical bills to find out the closest “box” I’ll ever fit in. We learned that it will be there forever and that my goal should be to just keep it under control and manage it. My thoughts and pleas to the public in addition to what was stated in your article would be:
1. Trusting that the “amazing and healthy looking person you saw could actually be experiencing what they say they did.” I have gotten so many times, “but I’ve never see you have that before.” “But you never had that in your mission or in high school.” Even from my own parents!!! I just wanted people to know that when I take the time to open up to them about a struggle in life, it makes me feel like an idiot that they don’t believe me. I sit and think, “that’s ridiculous! Only the closest people to me actually see it sometimes and it’s actually really scary!” When they don’t believe me it makes me feel like I’m making it up, when I’m not. The truth is it’s actually that bad, and I just wanted to talk to someone about it…. but now I’m totally regretting telling anyone, so I’ll just go back to lifting this burden myself.
The other thing I would point out is actually some thoughts and understanding that should be given to the spouse.
People need to know what a trial it can be for the spouse. My husband has told me that it’s mentally hard for him at times knowing it can attack at any moment, any place, no matter how important. He feels a lot of weight of the illness because when I pass out he is the “fixer”, he gets to carry me out (literally) of every bad situation and figure out how to get me to a safe place.
Second I feel that we should give the spouse some slack. (Boss’s, co-workers) or whomever else was counting on them that day). These people need to realize that somehow in the deck of life, my spouse was dealt to be a caretaker. And caretakers shouldn’t be judged for having to stop everything to take care of what is most important. (My husband gets a call from people all the time saying I’ve psssed out, it’s his job then to leave what he’s doing and come get me.) he helps me when I can’t help myself. That should be looked at as an amazing quality and not judged.
I just wish people had more empathy for the caretakers because they never know when they will be needed and they are the best of souls.