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Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 12/11/2009 12:34 AM (GMT -7)   
Any good tips on how to ignore your parents who don't believe in lyme? Okay let's make this harder- how do you ignore your parents who you live behind and pay rent to? I get a lot of verbal abuse and especially since my two kids are going through this with me- it really hits me hard.  I cry forever. It's like i'm ten times more sensitive.  And my dad especially throws fire darts. I'm worried about my husband being influenced by some of the things he says!
Moving is no where near being an option- I TRULY wish it was. 
I refuse to stay sick! Period. 

Regular Member

Date Joined Sep 2008
Total Posts : 283
   Posted 12/11/2009 7:27 AM (GMT -7)   
finding721 Sorry your parents are like this, mine are the same way. I even gave them the DVD Under Our Skin
to watch and so they could really understand about lyme and what it does. When my mom brought the dvd back
I was in bed not full asleep and over heard her ask my husband how much of what I'm going through was in my head.
I was furious, heartbroken, instantly sick to my stomach, all these feelings come crashing down. Since then it has been
really hard to even talk to them about anything cuz all I can think of when we talk is "How They Don't Understand, and
how they think its all in my head like some of those stupid doctors.

I know this sounds bad by the ONLY way anyone will truly understand is to live it like us.

The best thing you can do is avoid them if possible. They are not making your situation any better with the stress they
bring on you. As far as your hubby, educate him as much as possible. Try writing things down such as symptoms your
having and other things you go through and leave it out for your husband to read. Maybe then he will not venture on
there side of the not believing.

Good Luck

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 12/11/2009 9:55 AM (GMT -7)   
finding727 - I bought a Nerf rifle.... every once in a while I bring it out and just nerf my walls.

You are an adult and do not have to take their verbal abuse. Leave if they keep it up or make them leave your property. If not, call the police, keep track of everything they've done (keep voicemails, track times/dates of what and where they have said things, etc.). It may require a restraining order.

It's hard enough to try to get well with that kind of C@#$ going on (literally) in your own back yard.

PS - I haven't spoken to my mother in over 5 years... this is our 3rd go around, so of my 45 yrs., I haven't spoken to her for 15 years total.
Never doubt that a small group of thoughtful, committed citizens can change the world... it's the only thing that ever has.-Margaret Meade

Veteran Member

Date Joined Oct 2009
Total Posts : 699
   Posted 12/11/2009 1:53 PM (GMT -7)   

If you are stuck renting from your parents and therefore being their neighbor, it seems to me that the best thing you can do is to agree to disagree. It is sad that they don't take your health problems seriously not only because it denies what you are going through, but because they are your parents and I am sure it would mean a lot to you to have their support. But for some reason, maybe a lack of experience, maybe something else, they aren't in a place to give you that support right now. You can't force them to understand. Given that, if you can avoid talking with them about how you are feeling so that the topic doesn't come up, maybe there will be less discord. Beyond that, you have every right, no matter that you are renting from them, and no matter that you are their daughter, to be treated respectfully. So, if you do your best not to make your health a topic of conversation, and they are verbally abusive anyway, then the only way they will understand that you will not tolerate being treated that way is for you to remove yourself, and if you can do so non-traumatically, your children, from their company every time that happens. They will learn that if they want to have a relationship with you and your family, they must respect your boundaries. That's not as satisfying as having parents who understand and support you, but it's way better than having parents who are tearing you down. You don't need that; you're dealing with enough already.

Take care,

I have Lyme; it doesn't have me.

Regular Member

Date Joined Sep 2009
Total Posts : 233
   Posted 12/11/2009 6:37 PM (GMT -7)   
I am so sorry you're going through this with your parents. Willowrose said it perfectly!

I personally don't even discuss this or any health issues (or VERY minimally anyway) with any members of my family. We each have our own health issues to deal with, and I've just never been one to talk about my health problems - except here where it feels safe because we're all going through it and it's kind of anonymous.

My own husband never asks me about my health problems. I was really hurt by that and I started bawling one day and told him how much it hurts me. Nothing changed and then I took a reality break and realized that is just him, he doesn't make a big deal about any of his health issues (he has many and some are serious and/or chronic) and he figures if I want to talk about it, I'll bring it up. Go figure! I should add that he is a great husband and he does ask me about doctor appointments, just never out of the blue or in between appointments!

I think sometimes we really expect too much of other people as far as empathy or sympathy or whatever for our health issues. Everyone has their own health issues, and no one wants to be brought down by another person who constantly talks about or whose world revolves around some illness. Fortunately or unfortunately, however you want to look at it, I learned in my early 20's that my problems aren't your problems because you got your own - it was extremely hurtful and I was so confused about it. Time and observation taught me that it's not just me and my problems, it's universal, and parents are people too. They change as they get older - their world just keeps getting smaller and we have to accept that (HARD thing to do that takes lots of soul-searching and time). Like Willowrose said, have the best relationship you can with your parents and just don't talk about health issues.

Forum Moderator

Date Joined Nov 2009
Total Posts : 3266
   Posted 12/14/2009 11:16 AM (GMT -7)   
I am sorry you have this extra burden to carry when you are already overwhelmed with coping with getting better. I have experienced a painful lack of support from one side of my family as well. Some days I feel like I can deal with it better than others. Some days I almost obsess about their meanness. On the good days I can see that I get lots of support from other people and it just isn't possible to get it from everyone. You can't expect support from your parents -- though goodness knows that's where you look for it! And I'm sure you are thinking you would never do that to your kids.

In my case, I have put it down to a lack of understanding (even a refusal to understand) and a boat load of fear. People are afraid that they will be drawn into your illness, I think. Your parents deep down are probably looking for you to take care of them soon, they might be worried you won't be able to do that. I wonder how our non-supportive family members would react to an acceptable illness like cancer. Any better? Probably not.

They don't want to face that you are ill. In the animal world the other animals nudge and kick a sick one of their own to get them going. It may feel like your parents are kicking you when you are down but maybe they are kicking you to get you going -- still feels like a kick to you! I remember my mom would always shout at me and seem angry when I hurt myself -- funny way to express concern, but that was what it was.

And what's all this about Lyme disease sufferers just being pretending to be ill to get attention... First of all, I've found you don't really get that much attention, and if you do, who wants that kind of attention!?

To talk or not to talk? I answer questions about my health and try not to whine. (Of course sometimes you need to, and that's okay too -- especially in this kind of forum). I think it is important to let your husband and children know what is going on with you. Being in pain, for example, can make you strained and stern: a lot of people interpret it as anger or that they have done something wrong. A simple, "I want to do this with you but I am feeling like my whole body is screaming," can help your loved ones understand. One day my facial tic was so bad that my face was showing all sorts of things I wasn't feeling, it was only by explaining this that I put my husband and best friend at ease. Mostly when you tell people about this type of thing, even the most caring will simply nod and take it on board. You can't expect them to say the thing that will make you feel better; understanding and being aware is enough for them to do.

No self-pity, lots of humor. My daughter, who has been great maintaining a balance between being concerned and allowing me the space and dignity to get on with healing, said that it is hard to know what is happening from the outside. So I make a point of letting her know about my changes in treatments and a brief list of my symptoms as they effect my ability to function and interact with people. She appreciates it, others wouldn't.

You can take matter-of fact honesty too far, though. Some of our symptoms are shocking, frightening and worrisome (right, that's why we need support!) I mentioned that I was falling down a lot to my sister and she spent the rest of the week worrying terribly for me while I went on blithely doing what I do and picking myself up as necessary. She wants that week back!

Another way to look at it is that your parents really are supporting you in at least one way: Yes, you do pay rent, but they have provided you with a place to live. Perhaps they are good with your kids? That's worth billions. Just having them nearby is a line of defense that not everybody has. So if you can appreciate that, and try to let the bad stuff roll off. Maybe it's like wearing that old-fashioned woolen long underwear. You are warm, but it's mighty itchy!

And nobody knows what's going on in your head. When your parents say something mean, just imagine a little cartoon of them old and feeble and you just put roller skates on their walkers. Oh dear, that just wasn't nice!

Good luck! And thanks for bringing this up, it helped me a lot to think this out.

Veteran Member

Date Joined Dec 2006
Total Posts : 3520
   Posted 12/16/2009 8:45 AM (GMT -7)   
Tala3, I just wanted to add when my symptoms started 5 years ago my husband didn't support me at all. I'm sorry, but if you're not in my corner durning sickness, well I don't have time for you and I divorced him. I once asked to be taking to the emergency room and he said, "don't you think you should call before you come in" I said it's the emergency room! He once said I was faking my stabbing gut pains and my bloody stools so I wouldn't have to go to the bars, I was crying and gave in and went, I wasn't there even 10 minutes in pain and I said I'm going home and he let me leave by myself, driving humped over the steering wheel in pain, praying GOD just get me home. I feel for anyone who's spouse, loved one, family member how is not supportive! I lean on GOD and not on them, but I don't want you in my life if you're not going to care for me as I would you. When it all stated they said I had ulcerated colitis, but I wasn't buying that. 5 years later, a divorce, 14 doctors, $30,000+ more spent on supplements, doctors, just last week I got confirmation that I've been infected with the lyme bacteria. Ha, I said to myself, I never gave up and you shouldn't either. You have to be your own health advocate. Hugs.
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics, not much better. Supplements: Threelac, multi, iron,Allimed Allicin, Apple Cider Vinegar, very low yeast/sugar/wheat  No UC meds at this time.

Veteran Member

Date Joined Jan 2007
Total Posts : 2446
   Posted 12/16/2009 10:55 AM (GMT -7)   
TALA, great post and I agree with everything you said.

When I first got sick, I would complain to everyone who would listen. Turns out, I got on a lot of peoples nerves....haha!

Here's what I learned; take NOTHING personally. You don't have to accept verbal abuse in ANY form, but ask yourself what you're doing to contribute to the bad situation.
It's tough to think you may be adding to it, but most of the time when there is imbalance, there is a scale, We are one part of that scale.

No one in my family nor my friends believed I was sick with lupus/lyme and I was so hurt and totally ticked. Turns out, it didn't matter what they thought.

When you learn to let go of what other people think, life becomes much more free

Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 12/17/2009 5:53 PM (GMT -7)   
Thank you everyone for your replies! I am so sorry you all have had to go through this with family not understanding as well. I think all the advice was great. My counselor put it this way- i will pretend i have a bubble around me and their remarks will bounce off! lol.
I refuse to stay sick! Period. 

Veteran Member

Date Joined Oct 2006
Total Posts : 851
   Posted 12/18/2009 4:58 AM (GMT -7)   
Most people don't understand chronic illness, period. A lot of folks who suffer from chronic illness generally have a bit more comprehension and empathy.

If you have the same chronic illness as someone else, chances are you can relate, although your overall symptoms may vary, as is often the case with Lyme disease, and other multi-symptom diseases/disorders like MS, CFS. FMS, etc.

I don't understand what it feels like to suffer from congestive heart failure, diabetes or cystic fibrosis, or lupus, but I do understand how a chronic illness comes with its own set of problems and limitations.

In a nutshell, we have to accept that the majority of folks do not understand what we go through. But they most always like to tell you what to do and they will likely tell you how to cure yourself. "You just need to exercise more." ~ "You take too many pills." ~ "You should try (olive leaf extract, apple cider vinegar, yoga, herbs...)... ~ "You sleep too much." ~ "You have to change your diet." And all you can do is imagine screaming at them, or strangling them!! But you don't, so you try to EXPLAIN, because we all want to be understood and accepted, and we all want to belong.

Over the past ten years, I have learned NOT to discuss my health problems with most people. It has only proven to annoy and aggravate me. People don't like illness. Sick is not sexy. Remember, being a "sicky" means that you're now part of the minority. The majority are not sick, and they simply do not comprehend what it's like. Move forward, accept it. Awful words to hear if you're new at this, I know. Consider yourself very lucky if you have ONE loved one who listens without judgment, and who accepts things as they are today.

Just last week, my friend told me "You can't just go on like this" and then "I don't care what you say, but you were doing better earlier this year when you were exercising." Even though I had previously explained that earlier this year, I wasn't getting the fevers and the faint-feeling, and my overall health was better than it had been in years. Weeks before, I had tried to explain (Oh, that word...what a mistake) the change in antibiotics, the herxing, the coinfection, the return of the chronic fevers, etc. But THIS time, I did the right thing. I changed the bloody subject.

Everyone has given tremendously helpful advice. I wish you peace, love, good health, and happiness.

*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

Veteran Member

Date Joined Aug 2005
Total Posts : 4297
   Posted 12/18/2009 5:11 AM (GMT -7)   
Everyone has given such excellent advice!  My family never wanted to hear the word "lyme" either and they never understood (which hurt me as I wanted to be understood when I was sick) but that never happened.  Even though I have been better for  years, I do not bring up the word "lyme" to my family.  
I really don't have anything to add except don't give your family any "ammunition" so they can't come back with any nasty remarks.   Either post here about how you are feeling or keep a diary.   Yes, it's sad when a family doesn't give us support but we can't change others, we can only change ourselves and our views.  It was a tough lesson for me to learn:  to "accept" people for what they truly are and not "expect" anything from them.
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:

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