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How can I make people understand that I really am sick?

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Posted 2/22/2013 5:06 PM (GMT 0)
It seems like people just don't get that I'm sick and trying to heal. I think it is because they don't really understand Lyme disease or they think its nothing compared to some other illnesses. I try to explain to people how i feel but i feel like they think i'm exagerating or complaining. i just dont even talk about it to most people anymore. It just sucks that I have very little support from people who I thought cared about me. Even my parents don't seem to understand. I'm very independent but sometimes it helps to have someone there. Thank God for this site, or I'd feel so alone and have zero hope. Alright my venting is done. God bless you all through your journey with Lyme disease. <3
Posted 2/22/2013 5:27 PM (GMT 0)
I think most of us, if not all of us, have been in those shoes! It's incredibly frustrating to have a disease (or diseases) that aren't recognized or understood.

Back in 2007 when I first started here and had really ramped up my Lyme research, I kept coming across people who were comparing our struggles to those who had AIDS in the beginning - only because of the struggles that they went through trying to gain validation, recognition, and understanding.

Many of us find out who our real friends are as we try our best to heal from these infections. You can count on us to be here though!!
Posted 2/23/2013 2:33 AM (GMT 0)
That is one of the worst emotional struggles with Lyme. You can look through until you find my thread from last week and read it! I think it will help you on this topic!

Stay strong <3
Posted 2/24/2013 10:22 PM (GMT 0)
I've definitely found who my real friends are! And I really love this site. :) thanks and God Bless!
Posted 2/25/2013 3:54 AM (GMT 0)
i struggled with this for the longest time. i now have come to the realization that people will always doubt what they dont understand and what seems unlikely. both of these are true with lyme. after all how can we expect others to support us when the medical community itself doesnt. just remember to trust yourself and thk positive!
Posted 2/25/2013 11:57 AM (GMT 0)
it gets recognition at times when we dont want it to, I was asked what was on my arm when I went in for a massage, I explained it was a IV for my lyme, and the girl disapeared, then returned with the management to have me tossed out, but they told her it was safe and to proceed, so she did. (not realy relaxing any more though)
Posted 2/25/2013 12:29 PM (GMT 0)
I recall the days when I would try to get everyone to understand how I felt. I was in great shape, looked great, but was sick and they didn't get it.

Well with time and wisdom, I came to realize, it doesn't matter AT ALL what others thought, or believed or understood. It wasn't my job to get them to understand, it was my job to get well and use my energy on positive things.

If people in your life don't get it, it's ok, they don't have to, You get it, that's all that matters. Explaining to them often causes them to roll their eyes and you to get more frustrated.
Posted 2/25/2013 3:49 PM (GMT 0)
I get the actual eye rolling, without any form of shame...

then I roll my eyes too

then they feel embarassed, or they just don't know what to say anymore - lol

I think that sometimes I'm starting to react in a very spontaneous way, a bit unguided, out of the box, unexpected. That gives me a lot of satisfaction. Am I being mean?? 

I still feel very bad about this though. Sometimes it makes me so mad that I would loose 'all' of my precious energy in just 5 minutes. But lately I am so tired I don't have the energy to think about it, and it makes it easier in a very twisted way. I focuss on me, I'm being ego centered for once.

Like springjean said: trust in yourself!

In what you feel, don't let other pull you down.

Posted 2/25/2013 4:56 PM (GMT 0)
Marie, I TOTALLY relate. It's like I don't have any patience because I'm just too exhausted to think or care about what I say to others. I feel bad for it but I think we have the right to lose our patience with some people. I've had people (who I thought were my friends) yell at me when I was just venting. They told me I needed to stop making everything about my illness and try harder. That completely crushed me at the time. But now I've learned who my true friends are. And I'm not focusing on them. It's just about me getting better now. Good luck to everyone else having these problems. I think the emotional symptoms that come with Lyme are really the hardest and most painful to deal with. God bless you all through your journeys and thanks for the advice! :)
Posted 2/25/2013 5:44 PM (GMT 0)
good advice, sprinjean

there are days when i am out and about, such as today, I wear my lyme hat.

It is like my cloak. ( like yes, something is wrong with me, if I look wierd, leave me alone kind vibe i send out when i wear this)

Today at store, cashier guy does the traditonal, hi, how are you, I smiled or said ok

and he said are you ok? and looked at me a second more, I said yes, and took stuff out of my basket.

I was feeling soo ill, and felt oh my gosh, the world knows it, but they dont

he could just pick up on my vibes and my face looks the walking the dead

I knew I only had a little time in the store or i was going to crash,

and here I am bouncing back with my like minded community

I purposely put car magnets dif sides of my car , I had trouble finding what parking thing I was in...

sorry lyme brain tangent :)
Posted 2/26/2013 2:51 AM (GMT 0)
Thats a good idea, I should tie a balloon on my car antenna so I can find my car in a parking lot!
Posted 2/26/2013 5:00 PM (GMT 0)
It has been very tricky trying to get people to understand. My mom is finally on board. I sent her lots of info and gave her a copy of "Under Our Skin". I have one truly amazing best friend who now understands after I gave her a book a few years ago. She is in the medical field and having a greater knowledge of Lyme has helped her understand her patients with Lyme. If we can help educate even one person, there is a ripple effect.

There are some people who just need more time and information. A lot of people truly do not understand "invisible illnesses". Can you have the people read "The Spoon Theory"? And let their thoughts percolate for a bit... they might have an awakening.

There are some people that will never, ever get it, and that's okay, too. We can lead the horse to water, but we cannot make it drink. Our first priority is to ourselves and our health.

 

Posted 2/26/2013 5:23 PM (GMT 0)
Hi there, I'm truly with you. I'm blessed to have a support team but there are some that just don't get it. And it's fine as stated in here earlier. My biggest challenge is being at work. I really would love a super husband that has a great job and I could just stay at home, heal and be able to spend more time with my beautiful son.

But I'm single LOL. So I have to work and because I'm here at work they think I'm fine...asking me to attend meetings, etc. I already told my boss I suffer from anxiety at times and being in a room full of people bothers me sometimes. But hey if you are here then you're expected to work. Sigh.

I wish they would understand, I have to use sick leave even for a one hour doctor appt. It adds up when you are seeing a doctor every week so now I use my lunch hour or look at my bosses schedule to see when she is out and that is when I make appts. I think sick leave should be used for days where you just can't make it in :(

It's hard but I push forward and whether people understand or not this is what I'm dealing with and it gives me even more fire to get well soon!
Posted 2/26/2013 5:26 PM (GMT 0)

I think I had a very small breakthrough with my father yesterday. He actually was listening to me.

He asks me how I'm doing, but never listens to my answer. Yesterday he kind of did. Because we have another familymember who has chronic fatigue syndrome, and he got interested (after 15 years - I don't know if it is because it makes him uncomfortable, or because he just doesn't believe me being really ill).

And today, a friend asked me how I was doing with my treatment, and she also was interested.
It happened because my husband organized a meeting with 12 people at our house last weekend (I fled the house, couldn't handle that - had a fight with him for about 2 weeks about this subject), she was there and must have noticed things are really not going well, me not being there, not hosting the people at my own house. I left the house an hour before they arrived, and got back when they were gone.

Posted 2/26/2013 5:52 PM (GMT 0)
I'm thinking about going into work one day when I start herxing before they send me home - just so they can see they daily life of a lymer
Posted 2/26/2013 7:17 PM (GMT 0)
Having a hard time talking correctly today

at this one place, the woman kept talking and brain fog coming on strong

I wanted to say, I am gonna go home

but what I said, was I wanna go home

and then at this shop there were strawberries at teh end of the isle
I had the money in my hand, but I said can I grab these?

instead of I am going to get these also

the cashier just stared at me and was real quiet, like she was thinking, I was thinking they were free

moments like this, sometimes i want to explain but it is no body business
and besides not being able to talk well, I couldnt

so the only way i could really show someone i personally know how sick I am
is come along with me, spend an entire week with me

I dont have a video camera, oh yeah I do, but dont remember whre it is
to record myself and send to my family
Posted 2/28/2013 9:21 PM (GMT 0)
I think people need to be supportive and understanding even with doubts. Since my husband was diagnosed with ALS, he is not experiencing this with people. We are waiting for lab results to indicate Lyme is the root cause of his physical issues, and if this is the case, people will probably not believe this as a diagnosis. I understand what y'all are going through though. I have been what they call clinically depressed for many years. It's another one of those debilitating diseases - if that's what they want to call it - where people say things like "just get over it" and "be thankful you don't have a terminal illness." Even though my husband understood how hard it was for me, at times he would have a difficult time with understanding why I would want to hide under the bed covers. Now he knows what it's like because he is experiencing symptoms of depression - not because of his diagnosis - but we believe due to it being Lyme related. These people that have issues with understanding Lyme Disease need to see "Under our Skin". Hugs to all of you. I am so glad to have found this site.
Posted 3/1/2013 12:18 AM (GMT 0)
@Nspeedracer, Maybe everyone should do that " I should tie a balloon on my car antenna so I can find my car in a parking lot!" LOL So many people with or without brain fog have that problem.
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