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Lyme disease and Family not believing you are sick.

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Lyme Disease
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/2/2013 10:49 AM (GMT -8)
Let me start out by saying it's been a rough road for me, like I know it has been for all of us with Lyme. I had to find tooth and nail to get the first positive lyme test, only to be told I cured myself.

I have been sick for a while now, and yesterday, I had a family member email me, and tell me that they laugh about my fake sickness. That I am the big joke in their house. It almost brought me to my knees. I know she has not been encouraging me through it, but I did not realize she was reading everything I wrote on Facebook and laughing about it.

It was pretty horrible, but I had to remove her out of my life, the sad thing is she is my sister, and I love her.

I am lucky that my other sister told her off, at the point I was to upset to, but it was a very difficult time.

My question is how many people have went through this? I finally emailed her and told her I never asked her for anything, and I don't have to prove myself to anyone.


justme
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bluebyyou
Veteran Member
Joined : Nov 2006
Posts : 1952
Posted 5/2/2013 11:01 AM (GMT -8)
 

Ohhh, I am so sorry, Justme. I wish I could give you a big hug. You didn't deserve any of those hurtful comments.

It is a very sad state of affairs when we cannot get support from our own family. Some members of my family have made rude/insensitive comments as well. I was really blown away by it. If someone in my family or one of my friends was ill with a disease I didn't understand, I would learn about the problem and be an advocate for that person.  

It helped me to chalk it up to their blissfully ignorant state about invisible illnesses/chronic illnesses. They just don't get it, or don't want to get it.

Do you think you could send your sister a link to "The Spoon Theory" or have her watch the Lyme disease documentary "Under Our Skin"?

Big hugs,

Bluebyyou

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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/2/2013 11:04 AM (GMT -8)
I did put in on my facebook about the spoon theory, and the trailor of under our skin, I guess I can't change some peoples minds. It just takes to much energy out of me.

I didn't realize my disease was a joke, but if she was sick, I would do whatever I could to help her.

It's just sad to me.

justme
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opugirl
Veteran Member
Joined : Nov 2012
Posts : 3922
Posted 5/2/2013 11:14 AM (GMT -8)
I was part of the blissful ignorant group that blue described. Oh, what an alarmingly rude awakening!

I thought that the reason I wasn't telling my parents about my illness was because I didn't want them to worry. Now I realize that it was because they wouldn't understand. My OWN parents. They didn't see me at my sickest but christ I got down to 87 lbs. and have a freaking cardiologist.

I have since told both of them. I could see from their rxn that No, they didn't understand. They are still part of the blissfully ignorant crowd. Neither has asked how I'm doing.

How are you justme?
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MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 5/2/2013 11:23 AM (GMT -8)

I'm so sorry you have this going on...

Don't let anyone get you down, even if it's a family member.

Not everyone has an empathic character, I've learned that through the years. It's horrible that after a long battle for recognition, then finally getting treatment and not getting any help from a close family member.

I know it sounds harsh, but we have a saying in my language (I don't know if it's the same in English): one does not choose your family... sad but true...

You answered in a good, calm way, that's difficult in situations like that... I hope it'll make her think about it...

{}

 

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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/2/2013 11:28 AM (GMT -8)
I am doing okay, in a lot of pain, I think stress makes Lyme worse. I was seeing a great improvement with treatment, and using a odamed machine at my LLMD's office. I also stopped eating gluten, and sugar.

It's a rough a road, I know, but it's hard.
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thrive
Regular Member
Joined : Feb 2013
Posts : 141
Posted 5/2/2013 12:56 PM (GMT -8)
My heart is breaking for you. I am so sorry that you have experienced this and so sorry that your sister has not stood by your side to support you during this exceptional time of need. This is a hard enough journey without adding such factors on top of it.

I have not experienced anything near this. The annoying thing for me was my father being 'convinced' that my problems were stress, anxiety or depression. No matter what my symptoms were, he would offer relaxation exercises as a solution. I already went through a psychological work up that 'confirmed' that my symptoms were not psycologically or stress induced, and yet he would tell family and strangers alike that I was going through a depression. He didn't believe otherwise until I finally got my IGENEX results.

This situation heavily bothered me. Not only did I have to convince doctor's that something was physically wrong, but I also had to convince my father. At the same time, I knew that he was doing it because he cared. He was scared and he wanted a solution for me. He knows depression and he was trying to help by offering solutions that helped him in his darkest time of need. Also, talking (even to strangers) is his way of relieving stress. I support him in finding ways to meet his need to help and to relieve his stress. I am lucky to have him.

I wish I had some words to offer you comfort. May I say that your extended family here does believe you and support you. We are here to listen, to cheer you on and to give any words of support that we can. But I am sure that you already know this. In the mean time, I will say a prayer for healing in your relationship with your sister.
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/2/2013 2:47 PM (GMT -8)
I have found that strangers are more understanding then she is. She doesn't believe in Lyme at all, so no matter what I tell her she wouldn't believe me.

I had daily seizures , now they are every few days. She doesn't see me often , but on holidays, but we used to talk daily , now we don't speak , haven't for a few weeks, until she sent that email yesterday.

I am lucky that I have two other sisters, that try to understand how sick I am, and they support me.

Thank you both, it's rough, this life we live, but worth it.


just me
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bluebyyou
Veteran Member
Joined : Nov 2006
Posts : 1952
Posted 5/2/2013 3:44 PM (GMT -8)
Oh Justme, I am really sorry... I think you are doing the right thing by keeping your distance. If you've tried to educate her, and she won't even entertain the idea that you are sick, then that is detrimental to your healing. As you know, stress makes everything worse.

I hope you take some comfort in knowing that you did not do anything wrong. Her behavior is appalling. I hope she realizes this soon and tries to make amends.

We are here for you :)
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 5/2/2013 3:56 PM (GMT -8)
Hang in there, Justme. I too had to deal with a lot of ridicule from family members. The only ones who actually stood beside me were my husband and one daughter - out of four kids and one surviving parent, my Mom. I had to cut my Mom out of my life for a while because of the stress she kept bringing in, but I know that's different than it being your sibling. I'm so so sorry!

How about a cyber hug?? (((((((hug))))))) smilewinkgrin

You're one tough lady! And your right, this is a tough life, but giving up isn't an option for us and so we carry on. It wouldn't surprise me one bit that once you are healed to the point where just functioning isn't a chore, that you will go on to help a great many people!
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/2/2013 4:16 PM (GMT -8)
Thank you Traveler .

It's was just difficult for me to handle, and I let it get to me today. I know that stress makes the Lyme symptoms worse, so I need to learn how to let it go.

I have my husband , my kids and two sisters in my family that stand by me. I am very grateful for the Lyme community, and everyone on this site, including you for helping me along the way. At times I don't know what I would do without this site.


justme
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 5/2/2013 4:29 PM (GMT -8)
I'm so glad that we all could be here for you! You are a wonderful lady who is going through what is likely the toughest battle you will ever face, but your doing it!
As I said, you're one tough lady!
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andy cotton candy
Regular Member
Joined : Apr 2013
Posts : 73
Posted 5/2/2013 6:57 PM (GMT -8)
I totally understand you Justme. I have lost all my family to lymes. My brothers and sisters are all in the medical field and they say it is not true and more of a mental illness!! I haven't talked to my bothers and sister for about 2 years. If they see me or my husband they act like I'm not there. It is terrible. But I have had to learn that for my health I have to stay away from them anyone else that is negative because of the stress and what it does to my lymes. It is sad that the very people that you thought loved you are the most critical.  the people that care and surround yourself with them. It would be interesting I often think what would they do if all the sudden they get lymes!...................shame on our family members and medical people who treat us with such disrespect. Hang in there we understand and this website is a blessing........I care with many others.
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/3/2013 4:35 AM (GMT -8)
I agree with you all, I would never turn my back on a sick person, I would research, and try to help them.

Since they have decided I was a joke to them, I have removed myself from their Life.

It's really said that we are treated so poorly first by the doctors , then by our own families.


justme
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Cat53
Veteran Member
Joined : Jul 2012
Posts : 672
Posted 5/3/2013 6:53 PM (GMT -8)
Justme, I am sorry you are dealing with her lack of understanding, knowledge, and empathy. I feel for all of you who are going through this with family. It makes me think that maybe there are other issues they are dealing with. It's hard to understand why anyone, let alone family, could be so insensitive. Even if I thought the problems were psychological , I would still want to show how much I cared and be open-minded. My wonderful, Lyme diagnosed, husband does not have that problem because he was diagnosed with ALS with obvious physical symptoms to prove his illness. I, on the other hand, have suffered from what they call 'Clinical Depression' and I have in the past heard the typical "just get over it" or "just relax, you'll feel better if you don't stress out". Certainly it helps not to stress out, but you don't 'just get over it'. It's a real illness, just like Lyme is..and so many with Lyme - like my husband - also suffer from depression. I hope and pray that your sister will come to see that it is what it is. It certainly is no laughing matter. Cyber hugs to all.
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Lymer
Veteran Member
Joined : Sep 2012
Posts : 511
Posted 5/3/2013 10:36 PM (GMT -8)
I'm so sorry justme. Your story brought tears to my eyes. I know people think this way about me, and it makes me angry. They just haven't said it quite that outright. I'm sorry to hear that this happened to you. Would she be willing to go to the LLMD with you, and explain her reasoning behind this to him/her...since she's so all-knowing (lol)?

I have found that stress increases my symptoms drastically. So its really unfortunate that she was/is directly affecting your health. I hope someday she can see that, and that when she does she have the guts to apologize and beg for forgiveness. Ignorance might be bliss, but knowledge is power. I was once oblivious to Lyme disease as well, but had I known what I know now 10 years ago, I would have never gotten this sick. So just remember she can laugh all she wants but you're a much wiser and kinder person, and you made the right decision to remove yourself from them, at least until she opens her eyes a bit to see what's right in front of her.

I think this is THE most heartbreaking aspect of this disease, how we are treated by others, who should be reaching out to help and support us. It's very isolating and lonely.
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Shabbychic
Regular Member
Joined : Jul 2012
Posts : 395
Posted 5/4/2013 11:31 AM (GMT -8)
Yuck JustMe. I'm in a negative mood today and I really would like to say pretty nasty stuff about your "sister". Not only is she a terrible sister, but she's a crappy human being and has mental issues. What normal person would ever write such an email?? What is her point? If she doesn't believe you, fine but she should keep her trap shut.

As other posters have said, even if I thought my sister was making up a psychosomatic illness, I'd still be sympathetic. If you were my friend I would tell you to not ever talk to her again. Punish her for the rest of her life for it. If you can't count on her in a crisis, you'll never be able to count on her. As Mariel said, "we don't choose our families." But we CAN choose people to be in our lives that are caring and supportive--a surrogate family! I'm sorry this had to happen to you. It doesn't help with your stress. But know that we believe you and all think your sister is, well I don't think it has to be said. She's a lousy human being and I'll leave it at that.

I know as a Catholic I should say "I'll pray for her"-- but I've never been a great Catholic. I'm working on it. If I should become so enlightened, I'll let you all know.
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/4/2013 2:51 PM (GMT -8)
It was a big blow to me, she made in front of the fact that I have herpes now because of the Lyme. I told her if she ever researched Lyme she would know that most of us have ebstein barr, and herpes.

The thing is I never asked her for anything, she knows I pay out of pocket for my doctors visits and I lost my job in January, after being in accounting for 15 years. I could see if I was asking her to pay for treatment or something but I never did.

My older sister that has been helping me research told her off, and so did one of my nephews.

It's like we have to always prove our self , and I am tired of it. It's no wonder so many people with Lyme shut them self off from the world, I understand it now.

I been really sick the last two days, the stress hasn't been good to me. I can't let her make me worse, and I need to try to let it go, it's just rough right now.

justme
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 5/4/2013 3:01 PM (GMT -8)
Don't quit trying, Justme! Keep at it!! Don't allow the stress that one thoughtless, empty human brought to you, bring you down! You can do this!!!

I had two daughters-in-law that didn't believe me, and of course, my sons wouldn't argue with them. We didn't talk for what was a long time for me (over a year). I had to just keep pushing those thoughts of them out of my mind and concentrate on what I did have going for me - a wonderful, supportive hubby, one daughter and a good doc that really cared.

Hang in there, we are here if you need to vent further to get it all out, or anything else we might be able to help with!
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 5/4/2013 3:02 PM (GMT -8)
Shabbychic, I agree with you on sooo many levels!!! LOL!
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KO-LD
Veteran Member
Joined : Aug 2007
Posts : 887
Posted 5/4/2013 3:36 PM (GMT -8)
Justme,

Sorry your sister isn't supportive.  My sister is a nurse and she and the rest of the family choose to ignore that I have lyme.  If I was having a bad day and mentioned to my Mom that I was in a lot of pain she would say "what from" and I would say the lyme and she would just say "oh".  It's been one of the hardest things I've gone through with this disease.  Take Care, KO

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MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 5/4/2013 4:44 PM (GMT -8)
KO-LD,
I can relate to what you wrote.
'How are you?' - 'well, ok, but things could go better' - 'what's going on then?' - 'The Lyme is giving me a rough time' - 'Oooh' - very quick change of subject...
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 5/4/2013 4:58 PM (GMT -8)
I think it bad enough that we have to prove to our doctors, now it's like we have to prove to our family's as well.

I am getting to the point I really don't care what my family thinks of me, if they want to pay my bills maybe they can tell me what to do.

Thank you all for your help.

justme
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PrayingForAMiracle
Regular Member
Joined : Apr 2012
Posts : 289
Posted 5/5/2013 6:48 AM (GMT -8)
I too have lost a lot due to Lyme so I understand. My son and daughter no longer come around or call. I haven't seen my son in 5 years and my daughter for almost 2 years. A few years before this I saw things changing. It was like pulling teeth to get them together for Christmas and Thanksgiving. The last 2 years that I saw my daughter she said they already had plans with her husband's parents for Christmas day, so I said, how about Christmas Eve, she said no, we are getting together with his grandparents then. We always one or the other previously. I was heartbroken and I wondered where did I fit in. I politely wished her a Merry Christmas and my husband dropped off the gifts beside their garage on Christmas.

It hurts, I miss them and my grandchildren. I hate to say it but when I could no longer do things for them, babysit, watch the dogs when they went out of town, run errands, take the kids places and cook the Holiday meals I noticed things changing. That is so hard to admit.

Recently I decided I will no longer send cards for Holidays and Birthdays. We are struggling like many others with Lyme and I've fought it so long. We have spent so much trying to find a cure for me.
Last Christmas I sent cards with money to them and they returned them. At this point I broke down but decided I'm done. It hurts. The ONE and ONLY person who has stuck by my side is my husband, for that I am blessed. I would have never deserted a family member who was ill, God help us, things have changed in recent years.

I must have been a horrible horrible mother to raise children like this.

Justme, I'll pray for you.
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TICKLEDPINK
Veteran Member
Joined : Jul 2012
Posts : 914
Posted 5/5/2013 7:50 AM (GMT -8)
I really don't know what to say.I find your words heartbreaking.

I have always found comfort and support from my children and they openly show delight at every sign of progress.

I count myself very lucky when I read how some people here are being treated by family members.

Without the love of my children and "true" friends, together with the wonderful and caring support here,I don't think I would have had the strength to make it through my darkest days.

Don't we have enough to bear? Is expecting understanding and compassion from our nearest and dearest really to much to ask ?

I think not............and wish you all better days.

Tickled
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