Family doesn't understand lyme

I feel like I'm really misunderstood I'm exhausted, with numbness joint pain home bound. Nobody asks how I am they think I'm fine even my fiancé isn't supportive and when we go to the gym he tells me to keep going but doesn't get how out of breath I am and exhausted that's really the extent of my day. Any of you with Lyme have ideas of how to show people about this??

People with cancer or other debilitating illnesses are treated waaaay better than Lymies...Ive been especially 'needy', and have complained to my close friends and family that they never ask me "How can I help you"....they really just dont want to have to deal with it-thats the truth as hard as it may sound.

Even my sister who was diagnosed with Lyme in 2008, and who for 6 years kept on me about seeing a Lyme literate Doctor-then when I finally did in 2014 and got a diagnosis, my 'Lyme sister' hasnt even shown me compassion...When I was going through a very difficult time with emotions, crying all the time, ya know what she said to me? She said, "You have self esteem issues, and you have no right to expect people to serve you"!!! "SERVE ME"!!! ***??? I just want love and compassion, i feel so alone! She DIDNT say, "Lyme messes w/all the brains chemicals and it needs to be treated"...instead she made it out to be a problem with my attitude that I just needed to fix!!! Which by the way, she herself HAS NOT!

So, yah its very difficult when we dont receive what WE TRULY NEED, without being name-called a 'pity'partier'

Hi Meggs, welcome to our community!

I'm sorry you don't feel supported by the people in your life.

I think 1000Daisies suggestion - having them watch the documentary 'Under Our skin" might be a good start.

It is difficult...as no one really 'gets it'.

Because you are new here, it would be helpful for you to take a look at the "New to Lyme?..Start Here!" thread at the top of the page.
It's got a lot of great information in there.

What's that thing, the fight or flight response? I feel that sort of fits the stance I gradually started to take with my family.

If the issue and their understanding on the matter is important enough to me to fight for, I'll give it a shot, but there eventually comes a point where the only logical choice from my perspective is to end the conversation and cut them loose. Take flight.

If the person can't hear you, why hear them? If they won't care for you and your opinions, why bother giving a nod to them, their well being, et cetera?

You hear things like "do unto others" or that grudges are unhealthy, forgiveness is key, but you've got to wonder whether or not some of these people deserve for you to take the high road? As far as I am concerned, not a whole lot, and especially not time after time. Fool me once, fool me twice, etc.

Now, I try to be nice, civil, for the sake of keeping the peace, but I will never forget the care and understanding that was shown to me, when these people are in poor health, whether of mind, body, what have you. Now, that's saying I live to see that day come, which would be something (not that I am wishing ill upon them, rather that I do not know how many years I've got).

Though, I do not truly seek to be friends with these people, because history has shown that they do not have the right makings to be a true friend to me.

You are not in my corner, cheering me on. You have not pulled me out of the gutter, thrown me over your shoulder, and carried me home. You can't even lend me an open ear, open mind.

Where is the love? Where is the care? The trust? These things are lost to me.

All that said, what is this "family" thing you speak of? I thought I knew, but I am not so sure anymore.

But, you get my point.

People change, when the going gets tough. They don't wanna have to adopt or at least have their own stained by your mindset.

It's like, oh, you're say you're sick, you have all these problems, that is depressing, I don't wanna deal with that, because I would rather be happy.

I get feeling that way, but it is really confusing and hurtful to somebody when you say that, whether through words or actions, and then turn around and say.. oh, _______, I love you! I care about you! We're family!

LOL

Fight or flight. Try the educate them route, force it down their throats, but at the end of the day.. I equate it to, say, someone dealing with addiction - they gotta wanna be saved.

Can also empathize with you here, too. My DH is slowly getting a little better but it's been a lonely ride for the last 18 months with this and once in awhile he acts downright hostile about the whole thing so I know what you are speaking of.
My girls will call or send me an email (maybe once a month) that says 'how ya feeling?" How I wish they'd come out and do something wonderful like clean the bathroom or wash the floors but alas...Makes me wonder how many times my mother might have wished that I would have come over and helped her and I didnt' (shame).

I recently told my sister (who is the only one that calls to see how my day has been on a regular basis and would wash my floors but she's 5 hours away) that if my Lord Jesus wasn't walking this with me I wouldn't know how I could keep going. Thank God that He is faithful.

(((hugs))) to you Megs88

I've had all those experiences being spoken of as well - it's hard not to when you've been sick almost your whole life - and my own mom did turn her back on me, many times. It's painful and makes this journey so very hard, but honestly, if they've never dealt with chronic illness in their own lives, they simply don't know how to deal with someone in their life that has a chronic illness - then, throw on top of that the fact that Lyme is still so very hotly contested that it throws doubt into the minds of those that have chronic Lyme!! So it's even those that do love us have a hard time understanding.

I wanted to share something that happened a long time ago, when I was really super sick after my abx failure. My hubby and I were on rocky ground (mostly due to my emotional instability ), but we were arguing and I hollered out, "You don't even care!" - that stopped him dead in his tracks. He started to get tears in his eyes, and said - ever so softly - "but that's the problem, I do care. I care too much. Seeing you this sick is killing me. It scares me to death. I need you and to think that I could loose you to a disease that no one wants to even recognize leaves me feeling very helpless."

Yep - there it was. He was just as scared as I was. Yet he had to be strong enough to leave me alone (he was working out of state at the time) for up to 6 weeks at a time then he could come home for 4 days, then back off again.

That helped bring a LOT of perspective to my situation, and scared me! I mean if he was that scared....!!!!

So, while I completely agree that there will be many that will not be there when we need them, but reach out to them anyway. They don't have to understand Lyme to be of help run to the store, or do a couple of errands, or just come over for a bit - just a ten minute visit would help lift the spirits of most of us I think, and yet not long enough to wear us down or to interfere with any of the schedules we keep.

Try sharing these with your family members, you just never know who might be willing to step forward if they only knew what they could do:
Top 10 things you can do for someone with Lyme
/gotlyme.wordpress.com/2008/10/21/top-ten-things-you-can-do-for-someone-with-lyme/

10 Things To Remember If You Love A Person Who Have Lyme Disease
/www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance

People not understanding this blows my mind.

I've had siblings ask why my hands trembled and why I looked so sleepy when visiting them - after they knew I had Lyme for quite some time.

I imagine others just get impatient about this and most of the population cannot put themselves in others shoes. Some of us can though.