FINDING LOVE and PBC

[positivethoughts03]

Hi everyone I'm hoping for some advice as I am newly diagnosed having PBC & AIH. I'm 53 and divorced 2 yrs. Since finalizing my divorce I've been "happy" and finally confident in dating again. I have one man who I've dated off and on for about a year and recently he's back in my life. Now that I have this life long disease to contend with, my question is: are any of you in the dating world experiencing the same dilemma... do you reveal your PBC disease to any new men? Or is it a good idea to keep it to myself for fear of scarring off a potential new man in my life?? Any advice is appreciated!

[gizocsi]

As PBC is not that terrible, as I thought before I found this page, I think it's not the first thing You should tell Your new acqaintences. When regularly meeting sy, and doing different things together, having meals, You will probably need to explain this "condition", as for me it means a kind of diet too. As I don't know, how do You think about Yourself as a PBC touched person, I think, You should consider to believe, that it's just a "condition" of which (here I learned) people don't die, esp. when they do take a little care of themselves. Lately, after being retired, I don't have time to suffer as I have been in the first years from the diagnose. A course of dance made me feel much better last winter. And all what I wanted to explain is, that if You accept PBC lightly, You can explain it lightly, not painting horroristic vision of Your sufferings and terrible future. Try to be happy, You deserve it, it's best time for love. Hugs: G

[positivethoughts03 in reply to gizocsi]

Hi gizocsi thanks for your nice reply. That is really good advice and I appreciate you taking the time to help. I think taking the pbc diagnosis as just something lightly is a good way to look at it! Thanks again xo

[Hidden in reply to gizocsi]

Well said! Brilliant!

[Huggy7614]

Hi,

Ok, I’m not single any more, but I had been on the dating scene for years prior to diagnosis.

I found out I had pbc just after my partner and I moved in together and I had a medical for life cover. That was3 years ago now. My partner was a widow, her husband had liver cancer caused by psc and aih and had seen him die.

My diagnosis was a shock for both of us, and initially, like most, I thought of it as a severe disease, but obviously realised later that it’s not, and many people die with pbc not of it!!!

If I had been dating at the time of diagnosis, I would not have made it topic of conversation at first date, or even second, but if you think this man is a good potential candidate, then why not tell him. Put it this way, if he buggers off, he’s not the man you want in your life in any case. If he stays around and wants to support you, then that shows what he’s made of.

I’m 54, and in the last three years I have gone through the lot. Diagnosis, deterioration, HE, (not a lot of fun that one!!) and finally transplant in May. I’m now 5 months post tp and feel fantastic.

My partner has been absolutely incredible and very supportive. I am so so glad she has been around.

I sincerely hope that the progression of your condition is nowhere near as rapid as mine was. As I said before, many people die in old age, with pbc. Be one of them.

Yeah, I’d tell him (or in my case her!!) should you be embarrassed about your illness?? No.

Very good luck - with both this decision and life with pbc!! Andy.

[Huggy7614 in reply to Huggy7614]

Oh, and I agree about the take the disease lightly bit - although with a little caution!! 😀😀

[positivethoughts03 in reply to Huggy7614]

Hi Huggy7614

You're an inspiration for sure! So happy for you and terrific you are feeling great! Positive stories like yours sure helps put this into perspective. This support group is all I have so I appreciate your honest response!

If this man is the "one" (haha if that even exists), then one sure way of knowing is to see how he responds when I tell him. Only time will tell...

Stay positive and take care of your new liver. Live a long, happy and healthy life! Thanks again for your words of inspiration. xo

[Huggy7614 in reply to positivethoughts03]

Haha, yes, ‘the one’!! Oh how I remember those days of forlornly hunting ‘the one’!! I met some lovely people (and some total honey nut fruit loops) in my quest for ‘the one’!!

In any case, I’m a firm believer in love me for me, warts and all.

Most importantly, enjoy life - that’s what it’s there for!! 😝😝. A.

[Philippastcarin]

PBC is not the end of the world for most of us, most can and do live a perfectly or close to a normal life .

Be honest, but don’t make it a drama and it won’t be a drama.

If he runs then he’s not the man for you.

Good luck.

[Knackeredknowle]

Ditto... to the responses here especially the one I copied and pasted below...

for me:

I was married for over thirty years, messy divorce and then stressful family dynamic and drama. I found a younger man who was a nice ; that slowly developed into a relationship , often by leaning on him in hard times. I didn't see it coming so to speak.

My health has been deteriorating for last 6 years and after a serious heart problem and procedure was given a diagnosis of pbc that knocked me for six.

I was then scared how these health conditions would impact my life and relationships.

My partner has been amazing and we laugh much at the crazy new things I do and have started make a new slower life - as some symptoms drive me crazy especially the itch , mental fog, dry eyes and fatigue- so tired all the time. He makes me relax and not worry...finds the funny side of things.

Happy...laughter makes a contented life and what will be will be...we can't change or diagnosis but we can change our attitudes. I learned this from Collette (PBCFoundation) who was kind enough to speak to me when I was having a complete breakdown after returning home frustrated from the Dr Surgery.

I suggest accept and be happy with you and when entering a new relationship they will either accept the rough with smooth or they won't but you need support and we all here for you. Xxxx Best wishes with future and romance xxxx

Like many comments above but especially like this one....

" and do live a perfectly or close to a normal life . Be honest, but don’t make it a drama and it won’t be a drama.

If he runs then he’s not the man for you."

[mrspeffer2]

Good morning...Glad you feel well enough to entertain dating. I was single with this diagnosis plus some other limiting issues. I dated when I had the energy. I look at it this way. Would I want to know right up front if they had a disorder or a disease that would impact our relationship? I have always believed that disclosure is best. That will allow them to make adult decisions about the matter. I would wait until a few dates have occurred. Sometimes we decide early on that this person is not a match, so why waste your energy explaining it. I will say that in my experience, telling them never changed the game. If a man is interested in you, he will find a way to take on your issues, just like you would his.....it's not like we are radioactive or are completely debilitated. Speak your truth and enjoy the fun of exploring new people. Also remember, men are protectors by nature and the good ones usually want to take good care of us. Be well

[IAmTheGlue in reply to mrspeffer2]

^This

Men, good men, want to protect and take care of people they love. Women, good women, want to care for people they love. That's human nature.

When you find someone if they run, they are not the one.

[mrspeffer2 in reply to IAmTheGlue]

Amen sister!

[Cathycomehome]

Hi ,

I have just been diagnosed with pbc after leading a healthy life for 69 years

I split with my partner last year because it wasn't working out for me ....today feeling low, on my own , newly diagnosed , confused , family afar , would I reconnect with him ...no

I am hopeful to have one last romance in my life and look forward to going back out there ,armed with the knowledge I am receiving and I would tell a guy who I feel may become part of my life

Take care xx

[positivethoughts03]

Thank you for all the honest responses. I really appreciate it and truly needed this! I was feeling down and alone when I posted my question and now I'm feeling so much better. It's amazing how nice supportive strangers can be in these group settings. I feel fortunate to have found you all!

Since being divorced, I put a lot of pressure on myself to be strong for my kids and now having this new diagnosis, I try to be even stronger but feel lonely at times as well.

I'd say the consensus here is...if a man isn't up for accepting me having pbc/aih, then he's not the right one. And, yes I agree... Although, I'd like to think I would have come to the same conclusion on my own but I guess I needed someone to knock some sense in me. And you're right mrspeffer2 it's not like we are radioactive (which made me laugh out loud when I read that lol)! So thanks for the laugh...I needed it.

Best to all of you and thanks again for help j me putting this all into perspective. xo

[Parabola]

We all are imperfect in some way! As I get older... soon to be 60, I discover that more & more folks have some health issue or life challenge that is brought to the relationship equation. The difficulty, as I see it, is allowing our vulnerability to be visible. Ask yourself this question: if you met someone whom you really liked & whose company you enjoyed & that person revealed to you a health condition that required care and "maintenance" would you run to the hills? If you answer yes, it means one of two things. 1. You aren't ready to commit, or, 2, you just don't really fancy that person. The best time to tell someone about a very vulnerable aspect of your life is when YOU feel safe enough to be vulnerable with that person. For some, it will be 5 minutes after meeting them... for other's, it will be never! Only you can judge when the time to be vulnerable is right for you. Life is full of beautiful surprises when we are safe being vulnerable.