how do you try to get a family member to understand?

I tried, he saw the dvd under our skin

i gave him pamphlets, tiredoflyme. and some books , spoon theory'

he has seen me herx on the floor

i dont know what else to do,

i want him to understand, but he doesnt, i say txt is better and he wants to talk

today, i am having great trouble speaking and using the wet dry board to communicate


i am alone as it is, few family members left and he is not very understanding, frustrating

i feel so sad today

Have you straight out told him how sad you are?

What about bringing him to your next Dr. appt.? Maybe the Dr. could help explain how truly bad you are feeling?

I feel so bad for you. I wish (as do soo many of us here on the forum) I could come over and give you a big hug!

I pray for you to have a better day soon.

I wish my life was a reality show. It would have gone to a fun family constantly on the go, with full of happiness and success to a family falling apart, constantly crying and full of frustration and yelling. Yup, that is what lyme disease has done to my family.

1. My husband has gotten very angry and has no more patience for me. He doesn't understand. He tells me my problem is that I don't do anything and that is why I have all these problems. I then try to force myself to do stuff that I shouldn't and it ends up in disaster. Some days I say, I just want a hug and for someone to tell me its going to be ok. But no, I just get..I don't care anymore. I don't want to talk about it, I don't want to always hear about you. I DONT CARE!!

2. My brother insists that I get mental help. He thinks that im making myself sick. WHAT? You think I want to be like this??

No one understands a "herx". Sometimes I start to feel a little better and have like 1 good then and then go into a full blown herx. My husband is like...stop taking that stuff. You are just poisoning yourself. Your not sick, its the crap that you are taking.

Ugg..no that is supposed to happen.

I don't think we can make anyone understand until an widespread test backs us up.

 Thank you so much for sharing your pain. You are more able to express the effects of losing support than my son is. He has it, and I have to keep remembering. It is so so hard to know what is really pain, and fog and fatigue and what is temper tantrum or laziness, or something else I should be strict about. He's 9 and both are possible. But, I see his charming, sweet, helpful, eager side enough to know the other times don't own him.

We have so many people who believe, but not his grandmother who doesn't believe when he says he doesn't understand something he knows, or if he says he hurts. It isn't worth correcting her anymore because she doesn't want to know. Kind of like what Traveler said about posting Lyme stuff on non-Lyme sites - if someone doesn't want to hear it it only makes them angry. (I'm guilty of that in the past, with one person. I felt I was showing a posibility for a treatment/cure instead of a death sentence to him, but I'll leave that to the moderators now so I don't muddy the waters.)

Anyway, I don't want to risk bigger fights with his grandmother - more negativity sure won't help us. And unless someone she really believes in (not me) says all the symptoms are real there is no point trying to reach her. No, the research reports and testemonials and universities and etc. don't count. 

I wish I had ideas for how to reach into your husband's heart. If it were cancer and he knew you were sick because you vomited, would he be more patient? The fact that the illness is almost invisible is part of the problem for so many of us. Being sick on the floor could be an act? If you really have nothing better to do.

I can say just by telling me how much it hurts to be turned from, you have reminded me to be supportive yet again. It is exhausting dealing with the effects - we did a page of homework just fine, page two of the same stuff 'MADE NO SENSE!' on the top of his lungs. Click. What is the positive useful beneficial effect of that? I try to be generous with praise, I reward both effort and success so what motivation is there to spend what could be fun time (reward for finishing segments) not doing work he knew minutes before?

I think there's been a bit too much coverage of the occassional warped situation where someone really fakes/makes themselves sick for attention. When I hear people describe the good life they had before, and the strain on their families now, I don't believe most people are so ignorant of cause and effect that they would stick with a fantasy disease for more negative attention!

  

What reward can there be when people often don't even believe there is a disease?! ARGH! This is not my idea of a good time! And, it doesn't take long to see most people don't believe emotional issues are linked to Lyme - that must be lax parenting - a meltdown is just spoiled. I don't tell the majority of people who see us around about the Lyme - only those who I know will listen for a while. Believe? Who knows. I hope if they ever run into the odd symptoms they remember what I said and check it out.

Well, what it all boils down to is we believe in you, and we believe you. I'm so sorry you have the extra burden of not having support at home. Keep fighting the nasty little bug. You are worth fighting for.

It's kind of like: ARRGHHHH!

I'm sorry he's being such a poop head. Try to be firm, and tell him that if you're going to stay in the relationship, he has to make more of an effort to understand. Or something of the sort.

You don't need yet another person acting dismissive in your life, especially your sig. other or spouse. It's emotionally draining.

M

Ditto Chloe24...the disease is so complex in so many ways. "Some wont get it...until they GET IT".

All this crazy "herxing", Ga-zillion migrating symptoms throughout ones body, anxiety/mental stuff, controversy with what doctors can treat it, the testing is not accurate, etc, etc!! Its hard for people to understand....its ALOT.

No one gets that you cant just take meds/antibiotics and feel better in a few weeks like most people always do when they get sick.

Embrace who and what you do have and try to have patience with the others as they do not understand.

Try to not make everything about your illness and do not constantly try to 'make' someone understand. You gotta give them a break sometimes. My hubby will listen-but ONLY so much about lyme...as it becomes overwhelming to keep hearing or trying to understand all of it. I fill him in on stuff but I have to remember to cut myself off at a point (I can tell if Im starting to lose him in the convo smh lol). Thankfully-thats what these forums are for...WE DO GET IT & UNDERSTAND ;-)

Also, You def learn who your real friends (and family!) are when dealing with a chronic debilitating illness.

The ones who are and have been through this battle with me, I ALWAYS be there for them and never forget.


But for some unfortunately, this M. Monroe quote may apply:

"If you can't handle me at my worst, then you sure as hell don't deserve me at my best.”

At first I was adding just to get resubscribed to this link cause I accidentally clicked the wrong thing, then I thought hmm - it may be helpful to print some of the studies which describe specific symptoms you deal with so there is an outsider saying "remember, this is real!"

Meanwhile trying to make the most of better moments with the upbeat outlook you drag out of the woodwork may show him you're still you, just under outrageous strain.

Thank goodness for this support group. Good luck.