Does anyone know a good way to help family/ friends understand the severity of your health? I have tried to get them to watch Under our Skin and some did. However, it is so difficult to not have support from those around you!! Recently, I have had a lot of cognitive problems where I don't say the right thing or I can't finish a sentence, and people around me think it is just hilarious. Also, my pain has exponentially increased and people are confronting me about getting in a better mood. I am not even in a bad mood! Just because I am not laughing and smiling non-stop like I am generally able to fake, doesn't mean I am being rude. I try never to bring it up around people as to why I am a certain way one day. I don't want to be someone who blames every little thing on Lyme. Unfortunately, most every problem I have is Lyme related. It complicates things as well since I am college aged and most people my age aren't to a point where they can understand.
It is also hard for me to sympathize with other people's trivial problems I hear throughout my day. I am not saying that no one else can have problems. I understand that other people have other things that go on! When someone tells me about having a cold or being sleepy for several days, it is hard for me to genuinely be sad for them and comfort them. I have felt like crap for over five years. I can't remember not being sick and can't imagine I time when I will be well. How do you sympathize with that going on? I will have pain like in my lungs where it feels like there is broken glass in them and have to feel sorry for someone who missed a class because they are tired for partying too late last night? No, that's not going to happen.
Has anyone had similar feelings?
Posted by Lymetoo (Member # 743) on :
Very very common and hard to deal with!!
Moving this to General Support.
Posted by GiGi (Member # 259) on :
I sent this letter to my family and friends way back when. Eventually they got the message.
"I am college aged and most people my age aren't to a point where they can understand."
Unfortunately they don't understand when they are older either. Age seems to be irrelevant when it comes to understanding.
Posted by BoxerMom (Member # 25251) on :
All I can say is "Good luck with that."
We're all in the same boat.
I don't know if anyone who hasn't been through this can understand. But some can attempt compassion, or at least stick around and be in your life. Stick with them.
And don't feel guilty for not being a fountain of compassion for others. A cold is something the culture understands. Lyme is like being from outer space. It just doesn't compute.
I spend very little time with the people who annoy me. I don't know if that will change when/if I recover my health. I just do what is right for me for now.
It totally sucks. The best you can do is figure out what works for you.
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by Life+Lyme: [QB] Does anyone know a good way to help family/ friends understand the severity of your health? I have tried to get them to watch Under our Skin and some did.
However, it is so difficult to not have support from those around you!! Recently, I have had a lot of cognitive problems where I don't say the right thing or I can't finish a sentence, and people around me think it is just hilarious.
Also, my pain has exponentially increased and people are confronting me about getting in a better mood. I am not even in a bad mood!
Just because I am not laughing and smiling non-stop like I am generally able to fake, doesn't mean I am being rude. I try never to bring it up around people as to why I am a certain way one day. I don't want to be someone who blames every little thing on Lyme.
Unfortunately, most every problem I have is Lyme related. It complicates things as well since I am college aged and most people my age aren't to a point where they can understand.
It is also hard for me to sympathize with other people's trivial problems I hear throughout my day. I am not saying that no one else can have problems. I understand that other people have other things that go on!
When someone tells me about having a cold or being sleepy for several days, it is hard for me to genuinely be sad for them and comfort them. I have felt like crap for over five years. I can't remember not being sick and can't imagine I time when I will be well. How do you sympathize with that going on?
I will have pain like in my lungs where it feels like there is broken glass in them and have to feel sorry for someone who missed a class because they are tired for partying too late last night? No, that's not going to happen.
Has anyone had similar feelings?
................................................
Breaking this up for easier reading for many here.
Yes, your feelings are common! I think it becomes a matter of how to manage the situation of people having no idea what we're going through.
One thing I have done is learn about the illness and be able to explain what it is and how it acts in the body, so people have more understanding about it, like paint a picture for them about how it operates - it's the illness, not us.
Another thing we can do is hand them a good brochure about it. There are several available, through Lyme organizations.
I don't think people are going to understand until they get it, unfortunately. The only way they can is to find something like it that they went through, like not being able to sleep, or having had an injury, or some other illness that kept them from being and doing what they wanted to do.
Other than that, others do want our sympathy too, for what they go through, because that's what they live. I can offer it, if I'm not in bad shape. But if I am, I don't socialize!
Posted by Lymetoo (Member # 743) on :
Where's that letter written by LymeDad?? That was a good one... and the Spoon Theory.
Posted by ItsMyTurn (Member # 31469) on :
I totally understand. The only difference in my situation is everyone is so sympathetic to my husband and I just quietly suffer in background.
Hang in there and do the best you can to take care of yourself. I think LymeNet is the only place I can come to for comfort and understanding.
Posted by Andever (Member # 36185) on :
People will probably never understand a chronic lifestyle no matter what the disease. I was diagnosed with sjogrens disease at 38 (I'm 48 now) my 68 year old mother was diagnosed with it 1 year ago.
I had a really hard time listening to her constantly complain about the fact that she has this incurable condition that may threaten her life and that she has to take medication every day. She's in perfect health otherwise.
Now - don't get me wrong - I LOVE my mom with all my heart - but excuse me .... I've been dealing with this and three other severe chronic incurable medical conditions since I was 36 - she's 68.
I take daily insulin and 5 other oral meds a day. I spend my days in bed on a heating pad - she went skiing yesterday ! lol! See where I'm going with this?
I, of course, have tried to be supportive for her - but it does become really hard sometimes so I totally understand what you're feeling.
After ten years of trying to make my friends and family understand I don't really think they ever will and I don't know if there's any way to make them understand.
And, just like ItsMyTurn - I just quietly suffer in the background.
Hang in there ! At least there are support sites like this one for people like us!!
Posted by Life+Lyme (Member # 33568) on :
Gigi, thanks so much for the article.
Thanks everyone for the support. I just don't need to expect people to understand. Being patient is just difficult.
I feel like one of the worst thing I am told is that someone feels just like me that doesn't have Lyme. If they have one one little symptom that is similar to ONE of mine, they are like "I feel your pain." No. No you don't.
Posted by BoxerMom (Member # 25251) on :
After she had her babies, my friend told me, "Now I know what you feel like when you don't sleep."
Honestly, I wanted to kill her. She's not sleeping because she's doing something she wants to do in life: raise children.
And her body is ABLE to sleep, so she'll recover quickly when her schedule is back to normal.
My body CAN'T sleep, so I don't get to recover. I just keep getting sicker and more non-functional. (This was years ago. I've since recovered my sleep. YAY!)
Listening to someone who has it all: career, kids, house, friends, travel, say, "I know how you feel" is too much. I have none of those things. I have 20+ years of Lyme.
I didn't say any of this to her. There's no point. She was trying to be understanding.
Just venting, cuz I know how you feel.
Posted by WhitneyS (Member # 25666) on :
There are sympathetic people and unsympathetic people. No one could possibly understand cause when you're healthy, you have NEVER been there. Never felt what we feel.
Realize that they won't "get it" but there are people who will try, and who will be compassionate and really try to help.
The other people, you can't be mad that they don't get it--and its almost better you just know that they aren't to be relied on while you're sick.
Its a really lonely disease. I thank God that we're able to talk on the internet
Posted by hopeful4 (Member # 8486) on :
Very few will really understand. When you do find someone who "gets it", it feels so validating and caring, it's a rare gift.
For the most part, I tell people very little, and keep it simple, it's kind of a way to protect myself from the hurt of insensitivity.
Here's a link to The Spoon Theory, and best wishes to you.