Wednesday, April 6, 2011

When do you tell a date about your health?

Once upon a time, this wouldn't have been a question, because you had friends in common, who'd tell him for you, probably before the date, especially if those friends were setting you up.  "Mary, John is a big football fanatic.  John, Mary has major health problems."
But now, we're meeting people online and have no friends in common.
So that it doesn't entirely come out of left field, I allude to a few common issues (like my bad back) early on, so that they know I'm not 100% healthy; if they're looking for someone to run marathons with them, they'll tell me, and move on to some healthy woman. 
But I've found that if I mention CFS upfront, men tend to leap to conclusions based on stereotypes and false information – like that I'm lazy or crazy, or that all CFS patients are totally bedridden, or that I'm looking for a sugar daddy to support me.
So while I might mention the occasional symptom ("I can't eat that, digestive distress" or headaches or whatever), I save the actual name CFS until the guy has seen me in person.  I try to engineer a good day for our first F2F meeting, by resting up for a few days beforehand. 
After that first date, sometimes the next day, sometimes on the second date, it's OK, now that you've seen what I can be on my best days, now let's talk about the reality.  I make sure to tell them "you've got questions; I've got answers.  Unfortunately, some of those answers will be 'we don't know yet'."  At this age, most men are no longer interested in whether I can have babies, but because of Straus/Reeves' focus on finding psychiatric explanations for a neuro-immune disease, no one has ever done the research to find out whether CFS is passed between mother and baby in utero, or via breastfeeding, and even the notion that the physical stress on the body of pregnancy could make CFS worse is largely a matter of anecdotal evidence and speculation.
But I definitely wouldn't let a new relationship go too far without explaining that there are no guarantees; I can look (and feel) this good today, and by next week, I could be bedridden and you'll have to take care of me.
Having lived with this Damn Disease for nearly a quarter-century, I know what things are likely to set it off, and some of them I can avoid.  But one fine spring day some years ago, I had the doors and windows open for some fresh air, and when I looked out the back door, I saw the neighbor spraying pesticide on a tree; had I known, I would've left the house for the day.  And on a lovely summer day the next year, I awoke to the realization that another neighbor was having old roof shingles laden with mold removed and thrown into the space between her house and mine; as each one landed on the ground, a fresh puff of mold rising from it, heading for my windows.  Again, had I known in advance what she was planning, I would've arranged to be gone for the duration of her roof work, but to leave the house while it was in progress would only mean walking through this cloud of airborne mold spores, which might be worse than staying home with the doors and windows closed and the A/C turned off (to avoid sucking mold inside).
And, of course, the ticking time bomb in the background ... I'm mid-50s now, and the average age at death of a CFS patient is 57.  Did that 12-year remission in the 90s buy me any time?  That I've fought my way back from the depths of this 11-year relapse to a point of being fairly functional (as long as I don't do too much), that I'm improving instead of going downhill, is this a good sign, or is it that last burst of strength before a dying body shuts down? 
Another study shows that PWCs die 20-25 years earlier than otherwise expected.  The women in my family live to 95, so should I live as if I have only a few more years to live (the 57 average) or as if I'm going to live to 70-75?  Those are the questions that no one can answer.
Of course, the other option would be to look for dates on dating sites that cater to the disabled (see links below), but with CFS, I think it's best to have a healthy spouse who can shoulder 100% of the burden when you're at your worst, rather than a disabled spouse who relies on the relationship being 50-50 at all times, and can't pick up the slack for you. 
Ideally, I'd prefer a healthy man who has a disabled relative and has already learned compassion.  If he has experience with someone who can't do certain things, he's less likely to take it personally when I say I can't.


Mary said...

What is a date? Oh, yeah, I had one about 4 yrs ago. LOL! I can't imagine I'd have the energy to even get dressed for a date. I hope I've got some spunk in the future - it'd be nice to have a date.

CFS Facts said...

ROFL, Mary. I went years between dates, too. Some years ago, I met a really nice guy at a CFS event, but we're still waiting to both feel well on the same day so we can actually follow through on the first date. Fortunately, we both understand that it will be "hi, you feel up to it today?" "Yeah" rather than something planned in advance.

I've recently felt enough better to get back in the dating pool, though I'm certainly not wasting my limited energies on "just anyone". A friend, who doesn't understand, kept stressing "it's a free dinner" -- no, it's not; it's going to cost me a day or two.

Ross said...

I appreciate your thoughts on this topic because it's been on my mind more often. It's only been the last few years that dating has been any kind of possibility for me. I had to return from the abyss and learn how to manage this disease before entertaining such aspirations.

I too have heard the 25 year early demise rumor, but I question it's validity. I have never seen anyone survive being as sick as we get...and that has to take a toll on ones life expectancy, but I haven't seen anything even close to credible on the 25 year early demise issue. Even the NCF memorial list doesn't really show this. How did this idea get started? Any links? Thanks.