Disclosing medical condition on relationship start

Question

I'm 30, male, been with an IBD somewhere in between UC and Chrons since I was a teenager, during the past 10 years I've had several big operations and many small ones.

I've had an ileostomy (I'm male, picture for demonstration) in the past, between the first and second operation, which should've closed it and remained normal however it didn't take, so the third one was to recreate it. Perhaps some day I will re-attempt to reconnect the pathing, but for now, the quality of life with it is a lot better and I'm content with leaving it the way it is.

I've had serious relationships in the past, and it was never a big issue. It does cause some inconvenience when intimate, mostly that I have to be careful with it, but nothing too serious.

Recently I started a new relationship, which appeared to be going really well, we went out twice but have been in contact every day for about 2 weeks. Yesterday we had scheduled a date which's purpose was clear that we'd get intimate. Before we met I chose to go for a walk and tell her about my condition. At first, she didn't quite understand what it meant but I explained until she did. We then went back to my place, had dinner and after moving to the bedroom I showed her what it looked like from the outside (the bandage).

We watched some tv and fooled around a bit, after which she left, at leaving she told me she can't stop thinking about it. Specifically about how it's something that I can't control (that it's actively working all the time). This was last night and I haven't spoken to her since (usually we would text during the day).

I've decided I would just give her time to think about it and process, I imagine she'll figure out that it's not that big of a deal and still choose to go ahead and attempt a relationship (this is the first and only un-matchability so far). But I'm still not sure how I feel about the fact that she's bothered by it.

Any tips on how to proceed? How to decide for me, if her being bothered by this shows a negative side of her character?

Also - none of you proposed anything regarding my current plan of action of not doing anything. What do you think? Reach out? Continue waiting?

Answer 1

Give her some time.

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My situation

I'm a teenager with epilepsy, which is has been in remission (at the least) for the past four years. I was first diagnosed eight years ago, at the age of ten. Things were difficult to deal with for a while, but I had the support of my friends. The worst part was knowing that symptoms could manifest themselves without much warning, and while medication strongly lessened them, and prevented full-blown tonic-clonic seizures, I knew that I needed to trust my friends and family to do the right thing on the off chance that something terrible happened.

My first (and current) relationship started about a year after I had my last major seizure. I didn't know whether my epilepsy would continue to progress, and it still worried me. I went on a date or two with my girlfriend, and eventually told her about my condition and the history behind it. I did a couple things in particular:

• I explained what the disease is and, in general, how it works.
• I told her about my experiences with it, and my current status.
• I was up front about what could happen in the future, and what I would need help with.
• I told her about what things I can't do because of epilepsy and the medication I take (for instance, I can't drink and avoid strobe lights and clubs).

There's a very realistic possibility that the two of us could be alone and I could have a seizure of some sort. She would be the one to get help, and I would have to trust that she would do the right thing. I don't think she was overly bothered by it, but it did take a bit of time for her to understand what things I can and can't do.

What she might be thinking

We can't know for sure (yet) what in particular is bothering the person you're dating. I do have some ideas:

• If it's the risk of something terrible happening to you, reassure her that your condition is not fatal. While you'll have many things to deal with in your life, this is not a disease that is going to seriously disrupt your life to the extent that something like cancer might. You've been strong so far, and you're going to get through this.
• If it's the reluctance to shoulder the responsibility to help you if something goes wrong, be clearer on what (if anything) she would have to do. It does seem like you've done a good job of that.
• If it's any possible lifestyle limitations that you might have, maybe this isn't the relationship for you. In my case, I simply wouldn't have been able to date someone who couldn't accommodate my medical needs. If my girlfriend wanted to always stay out late, or drink, or whatever, then I simply couldn't have continued. Relationships need to be healthy for all parties involved.

What to do right now

Consider that what you've told her may be a bit of a surprise. I wouldn't blame her for not quickly agreeing to continue dating. Your condition, as I said, requires trust, and agreeing to that trust, is not something to be done likely. I don't think she's done anything wrong by taking some time to think it over.

I can't say that I'm that familiar with IBD, but it's certainly not something to be taken lightly by her. My girlfriend was pretty understanding about my epilepsy, but it took some time for things to fully sink in. I wouldn't have wanted to rush her in any way, and I think that you're doing the right thing by letting her think.

You do need to let her know that you (hopefully) understand her reluctance. You haven't rushed her; that's great. However, given that it seems to be the next day, you should acknowledge what you told her and reassure her that you support her taking the time to think about it. You could call her or send an email (or a text, but texts are, in my humble opinion, a bit short and casual for matters like this).

I'm not having an easy time remembering exactly what I told my girlfriend when I said something similar, but it was along these lines:

I know that what I told you might be a bit of a surprise. I understand that you might be a bit reluctant about things. At first, epilepsy was hard for me to deal with, but over time, it's gotten better. I really don't want to rush you into making a decision yet, and I hope that you understand what the situation is like for me. Let me you if you want to talk more about it.

The conversation that followed was actually pretty short, because she adjusted well to the problem, but I would not assume that the same will be true in your case.

Answer 2

Wow... I was pretty taken aback by your story. Recently, I had an abdominal surgery (appendix rupture) and I know, to the lesser extent, how difficult a recovery is and that consequences of complex surgeries often leave horrible scars and decrease your quality of life. Sometimes temporary, sometimes indefinitely.

Some people will never understand the struggle; either from pure ignorance or because they never had to deal with such problems. A person you are mentioning seems to be the second case.

Don't take it personally, but everyone has their "dating preferences", maybe someone like her wishes to find a healthy individual. She might be afraid to tell you this as bluntly as I had, but her withdrawal clearly indicates just that. I am so sorry to tell you this, but not many people are compassionate, and chances of finding an understanding partner are in your case diminished.

If she decides not to write you back, then move on. I sincerely hope you find someone who won't mind your condition.

Best of luck!

Answer 3

To give a different perspective to this. It sounds to me with phrases like "can't stop thinking about it", "I hope you understand that the problem is with me and not you. I'm also sad but that's how I feel", "something that I can't control (that it's actively working all the time)" and "I think I'm not mentally ready for it." that she in fact has a fear of this, something I can relate to. I have a very similar fear myself so perhaps I can give some insight.

I'm making assumptions but if she is at all like myself, it isn't something she can control. And describing it as not being able to stop thinking about is a fairly accurate way to put it.

Seeing a person connected to machines, equipment or tubing (particularly if its longer term) just gives some people including myself an uncontrollable sense of dread and fear to the point in my case I feel physically sick in my stomach being nearby or thinking about it, but cant stop focusing on it either. To put it another way, I expect now she knows you are she literally cant see past it and any thoughts of you instantly bring her back to thinking about it, which makes it hard to do so.

I am totally aware that it is not rational, but neither are many fears. I will tell you now, looking at the picture linked in your post made me feel physically sick from the stress and fear of seeing such a thing, although I can control such fear to the point I can be functional I don't ever see it going away, or not making me feel weird.

Don't try and judge her as if she was not wanting to be around as she thinks you some kind of invalid, as this kind of phobia is just as much uncontrollable as physical illness. I have never been in the situation she has of finding someone close to me with such a condition long term but my grandpa was in a somewhat similar situation close to his death so I remember being extremely torn between wishing to spend time with him and trying to deal with the constant fear. In the end I wasn't able and spent very little time with him close to the end. I expect from what you said she actually feels guilty about this which is why she wasn't more plain about it but doesn't know how to explain.

The only way such things can be potentially overcome would be therapy and lots of mental control, but that may still not be totally successful. In this case, unless she tries to initiate more contact I would just move on, it sounds like you both have conditions that make it a difficult fit together and its unlikely a relatively new relationship will overcome them.

Answer 4

I warned my girlfriend that my condition requires someone with "patience and understanding". That has now become our personal catchphrase for many things - sometimes serious, sometimes jokingly. If she considers that a "disability", and she's unwilling to handle someone with a "disability", then it's probably time to move on.