How do I explain Lyme disease to family and friends?

I am wondering if anyone can direct me to a website, video, or anything else that can give a definition and explanation of what Lyme disease is and the symptoms associated with it.


Two years ago, back when I didn't know my illness was Lyme and my symptoms were getting worse and worse I just stopped talking to my friend and my aunts, uncles, and cousins. I didn't know what to tell them all and based on how my siblings were reacting to my illness and how they were treating me, I knew my extended family would have the same reaction and have the same hurtful things to say. When I got diagnosed with Lyme a couple months ago, I was going to keep my Lyme disease secret from them until after I got better and have a job but now I might be going to a sort of family reunion in a couple months and won't be able to hide my illness or keep the Lyme secret.

I really need help on explaining Lyme to them all because a good chunk of my family are not sympathetic people and they are judgmental. I especially need help explaining the symptoms and how painful it is and why it makes being able to stay in college (I was at a really good university but had to leave and move back with my parents because I was just too sick to function.) or work full time impossible. Also on why it is impossible to live alone and completely 100% take care of myself and my dog on my own.

I also finally have to tell my friend about my Lyme disease because she invited me to her wedding in a couple months and I need to be able to explain why I stopped talking to her (and why I am not going to her bridal shower) and hopefully she won't think I am a completely horrible person. She is sweet and understanding though so she will probably be fine with it all, but I still need help on how to explain the disease to her and why it has kept me from being the fun, active, attentive friend I once was.

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If anyone can help me out I will really appreciate it! I have absolutely no idea how to explain this disease to my extended family and my friend. I would love anything like videos, articles, websites, or just your own personal definitions and descriptions of the disease. Scientific studies and hard facts would be great, too. Thank you! :)

Post Edited By Moderator (opugirl) : 4/23/2014 9:16:41 AM (GMT-6)

Hi yellow daisy,

I'm so sorry that your family doesn't get it and does not give you support... Sadly, many of us have been through that, myself included.  Right now I don't have any links to video's or articles, maybe someone else will come along and help out.

I tried explaining lyme to my family, etc. and no matter what I printed out back then to show them they still didn't believe in it.   So I stopped trying to convince them and just kept it to myself and saved my feelings for the lyme forums where others understood.

I know it really hurts when a person doesn't get support especially from their family and loved ones. 

If I were in your shoes, I wouldn't try to make them understand (people don't get it unless they "get it", lyme that is).  I would just go to the reunion and make the best of it.  This is still a couple of months away so who knows?  You may be feeling better!

As an afterthought there is Under Our Skin:

http://www.underourskin.com/

I believe the video below is free:

http://topdocumentaryfilms.com/under-our-skin/

Wish I could be of more help,

Denise

I have the exact same problem and despite the seriousness of my whole 5 month ordeal, my Mom STILL won't believe me. She thinks all the pills I am taking is what is making me sick. Not the case at all.

I also had the family function where everyone was there back in February. It was not a pleasant experience for me lol and I just wanted to leave. People would say hi and try and spark up a conversation but I was just really anti social and all I had on my mind was Lyme disease. My Mom actually broke down in tears seeing me this way.

Honestly the strangest thing is my Mom and Step-Dad prefer to believe that I am depressed and need to take anti-depressants because that's what my family doctor diagnosed me with. Even though I told my family doctor I have lyme. It got me frustrated because the anti-depressants don't always work with lyme and I would get them all angry and they would accuse me of "not taking my anti-depressant pill" ... Then I had an insane emotional herx. All I get from them is "have you been taking your pill?". I said YES I have been taking the pill, it's not to make me happy it's so you will be happy I take it.

Anyways. It sure is hard to talk to people about if, then when they realize how severe it is if they choose to understand it, they will be like yikes you got that!

I like what deejavu mentioned. "People don't get it unless they "get" it". Yuo that is totally true and it's the thing that surrounds all controversies in lyme.

Moderators, the formatting of this thread is messing up, I think it maybe due to the really long url. Not sure if this is happening to othrrs view. I really wantvto read this thread but font is so tiny and seems no carraige return.

It's strange how family, relatives, friends don't take it seriously. I have been suffering for 14 years, told family and relatives about the disease and to this day, if I am herxing or relapsing and don't show up for a function or gathering, family will say " she caught something." or, they'll say "she doesn't care" and they truly don't remember that you are suffering from this disease - they'll say" what's wrong now?" I'll mention again that I am coping with Lyme and to this day - 14 years later they ask" YOU HAVE WHAT?" like they're hearing it for the very first time. It's ALL so strange that the major support we should get is from our loved ones and at times it really doesn't feel that way. Are they in denial? All I know is that you can't meet everyone's expectations and hopefully with time they will all see that this is no joke. I truly believe that this disease turns us into the most compassionate, caring individuals and proof really is HERE in this forum. Take Care of yourself right now and DON'T worry about what he/she/they think if you don't show up to an event etc. You REALLY DON'T need the added stress - that's what caused my relapse and have been paying for it all month. Take it one day at a time and think positive thoughts. God Bless.

Thank you again for the replies! It definitely helps. It absolutely boggles my mind that people are so weird about Lyme disease and don't want to hear about it. You don't have to understand to be understanding, and it is sad that people just don't get that.

Theresal58, I will probably end up doing what you do and just call it a bacterial infection and compare it to west nile and malaria, and maybe not even mention the word Lyme. I feel like that would be more understandable to people who are perfectly healthy and can't even comprehend disease.

Hi Yellow Daisy,

My husband has been infected for three years. Neither of our families or friends understood until his parents visited for a week. Now, they get it. My family still does not understand. We showed them the trailer to Under our Skin and once they could see the possible severity, they still don't get it, but they are understanding. However, they still say, "Well, he looks great", which is potentially the curse of Lyme. I can tell how he is feeling though; he just doesn't complain to others.

In addition, I was whining/venting one day to a fellow teacher about how I have to take care of everything at home. Cleaning, caring for our critters (hens, meat chickens, goats, sheep, dogs etc.), haul firewood, laundry, the entire enchilada, and she replied that I had simply enabled my husband to be lazy and sick! I wanted to kick her!

I have learned who I can share with and who really listens. Our lifestyle and all the work it requires is what keeps me sane. Oh, and this forum.