I have had Lyme for about 7 years and am in my early 30's. I was married in my 20's and divorced. I had one significant relationship after that for 2 years which recently ended. I think the burden of the disease may have played a part, but was not the ultimate ending. I am sort of wondering just generally for others with Lyme what are your experiences? Do others find it isolating, alienting, frustrating?
Posted by sweet pea (Member # 6495) on :
Hi focus,
I also feel isolated, alienated and frustrated, and I would bet that a lot of relationships end due to Lyme disease. I guess it depends on how each individual can handle it. I'm sorry you've been through a difficult time.
Luckily I live with a wonderful man who is taking good care of me, and can handle my psychological problems, and the fact that I can't do very much during our free time. This has been for almost 2 years, I do wonder if I do not get better soon how long he will able to be so supportive.
And from my end, it is hard for me to be in the house when his 2 sons are here (every other weekend plus some vacations), and I wonder how much longer I can take it. My head just can't handle the noise and lack of privacy, I need to be alone in a quiet place for a good part of the day.
That is it in a nutshell, of course.
P
Posted by hopeful123 (Member # 3244) on :
hi and welcome to lymenet!!
i don't have an SO, but i know this disease has wrecked havoc on my social comfortability and does so to this day.
i'm doing better than i was, but not like i used to be in terms of comfort around people and confidence in myself.
check out the topic on being excluded in support. you probably can relate to that thread!!
Posted by Carlie (Member # 8745) on :
focusonsurvival, I can say having lyme off and on for God knows how long has made me feel so isolated, especially in the last year. I have been in so much pain, and have lost all feelings of intimacy, and my husband has really not been much support. Although, there are of course personal issues over our 25 year marriage that have never been resolved,and he has a disability himself, and has not worked for over five years. He is used to me being the strong one. I am still trying to work, but it has been so difficult. I am trying to hang in there until we get our a loan paid, which is 2 more years. Not sure if I can make it, even tho I have a really flexible job that is not physically hard. It is really stressful! I feel really stuck, and feel my husband really does not care how hard it is for me to keep going, and is now pulling away emotionally. I do believe lyme has played a huge part in problems within my relationship, but what can you do! I have my God, my children, my job, and my wonderful dogs that keep me going, and of course now I have all of you! I guess that is my message to you. Look for all the positives in your life, and embrace them daily! Carlie
Posted by seibertneurolyme (Member # 6416) on :
Being with hubby (he is the Lyme patient) basically 24/7 for 5 years has been harder on him I think than on me.
I was a housewife for several years before he got sick so I was used to staying home.
I remember one of the psychiatrists asked him what he did all day!!! Anyone sick with this disease knows the absurdity of that question.
Between doctor's appointments, medical tests and procedures, weekly or monthly blood draws, massage or physical therapy, calls to insurance, calls about test results, letters to disability
and social security, trips to the pharmacy and the health food stores, doing medical research at the library, copies and more copies at the office supply store and the list goes on ... Neither of us is lacking in things to do.
We are in a somewhat unique situation -- we packed a suitcase for a 2 day trip to see a doc and then started getting referred from doc to doc. Ended up returning home 4 years later.
After 60 plus docs in 11 states (what a way to see the country) came back to our apartment and had to once again go out of state to find a PCP -- the first 2 fired us and the new one is 4 1/2 hours away.
Just imagine staying in hotels or apartments in strange cities where the only people you got to know were the docs and nurses and other patients. We did stay in Naples, FL for a year and in Indianapolis,IN for 2 years so it was only about a year on the road.
The hardest part for both of us has been missing family events -- his mother's funeral, my brother's and sister's weddings, have never even met my sister-in-law or the 3 new babies, hubby also has a new nephew ... There are many family members we have not seen in 5 years.
For the most part hubby has been too sick to travel even if we could afford it. Riding in a car for more than 30 minutes is a major problem. He can't sit through a movie or even go to church. Has had to leave restaurants if they were too crowded or the music was too loud.
So, in answer to your question, Lyme disease has definitely been isolating, alienating and frustrating !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The funny part is that I am no longer shy and I don't let docs or anyone else intimidate me anymore. So I guess some good has come out of this experience.
Bea Seibert
Posted by Carol B (Member # 9110) on :
Definetely a factor in my mariage of 18 years-my husband have made it through innumerable tragedies-including the death of two children (April 2004) , I was diagnosed with Lyme July 2004- and it has been downhill since then-we are currently in pastoral counseling. I pointed out to my husband the time line of our emotional /intimate seperation, but I still don't think he gets it. He feels abandoned and rejected within the relationship, and I feel unsupported and ready to leave-I cannot take the added hassle-I personally think there isn't much hope for us until I recover some more-I just hooked up with an LLMD in April and am finally getting appropriate treatment -recovering from Lyme is a fulltime commitmernt-but since my hubby doesn't understand he is continually disappointed because I cannot live up to his expectations. Things are not the way they used to be. Don't know what's ahead, Balto Carol
Posted by bettyg (Member # 6147) on :
Welcome newbies Focus, Carlie, and Carol,
Now I have a big favor to ask of you folks as a neuro lymie, please got back into each of your posts above and break up your long paragraphs into shorter ones and DOUBLE space between EACH of them please.
Then we neuro lymies will be able to read/comprehend your posts/replies.
We really do enjoy being involved giving you our suggestions, experiences, advise, and lending support when you need it.
Please remember to do this on every post and reply.
Also, always have a SPECIFIC topic title about what you'll be discssing. Relationships & lyme was EXCELLENT! We knew at a glance what this is about.
Also, by having this info, we can do a search and have better luck finding this months and years later!
Be sure to print off TREEPATROL'S NEWBIE LINKS in medical, top of 1st page.
Print off Dr. B;s 05 lyme treatment guidelines too, 33-40 pages!
Thank you for understanding and your cooperation. Posted by bsm (Member # 8951) on :
I just wanted to weigh in on the relationship issue. It is VERY isolating and difficult. I've actually had to take some time from my boyfriend/partner and move in with my parents temporarily, because he cannot handle the strain of taking care of me in any respect. On the other hand, he's been nothing but supportive emotionally when we speak on the phone or see each other. I also have various vulvar pain problems, which is how I originally was diagnosed with lyme. My LLMD finds that over half of her vulvar pain patients have Lyme. That portion has been unbelievably rough on our relationship. I'm pretty young--26, and we've only been together for 3 1/2 years. I pictured myself getting married about now, and it certainly won't happen while I'm so sick. Relationships certainly do suffer from Lyme...
Posted by tickitout (Member # 6982) on :
When you are very sick for a very long time you lose friends(if you want to call them that, I perfer not to)not being able to get up never mind go out totally isolates you from society and you lose your social skills.
To be in among people is very difficult like there is a barrier around you. Communication, thoughts, conversation is lost. Confusion is not a stranger.
Your thought processes are nearly diminished. It's like starting to learn how to talk again.
Long term illness most definitly affects everything in ones life. I am very fortunate in that my husband supported me every way possible for a very long time...
I consider myself blessed for he told me years ago we were dealth our cards like it or not and we will play them out together.
Hope I didn't get off the subject but that's what I think you wrote about.
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