Issues for PSCers in their 20s-30s

Sometimes life just doesn’t turn out how you plan.

The soufflé falls flat, the lyrics don’t ring true and that hottie in the corner is staring just ever so slightly past you. No matter what your fantasies were for your 20s and 30s, you never doubted for a second that they’d happen. Nothing was out of bounds whether it was becoming a millionaire, getting married, having babies or playing professional baseball.

Nowhere in those plans did you have to face chronic illness, taking pills, life expectancy. It’s a sad fact. PSC is life altering. However, life altering doesn’t have to mean life ending or that that glass is anything less than half-full, even if it’s not filled to the brim with fizzy champagne.

PSCers live fulfilling lives every single day. They have children, enter careers, get promotions. They live life to the fullest and so can you. There will be challenges. You’ll face things that others may not understand, but the same could be true if you did score that multimillion-dollar baseball contract, too, right?

So, what are some of the biggest worries on the minds of young PSCers? Dating, drinking, sex, how to tell someone, career, children and life expectancy top the list. So, let’s break them down one by one in no particular order.

Dating

For many of us out there, dating is a main part of our social life. We hope to go out, have fun, maybe make out a bit and, quite possibly, at the end of the day find somebody we want to spend just a little more time with, like, I don’t know, the next 50 years or so. But since most dating takes place at night or with alcohol, what’s a PSCer to do? If you’re one of the many who is exhausted early, there’s no shame in suggesting a lunch, brunch or breakfast date. If you’re asked out for drinks, respond with a great little coffee place you know. The moral is making it work for you. Don’t give up; go out!

The group date can be a great idea as well, just enlist a close pal and if you get too tired to hold up your end of the conversation or need to sit and rest somewhere and don’t want to draw attention to it, enlist their help to cover or keep company. Bonus? You’ve got someone there to watch your back and hash things over with like what that look really meant or how cute he/she looked in those jeans.

Another hurdle many young PSCers face is feeling like they’re “broken,” like nobody would ever want them when there’s a shiny whole person just around the bend. It’s so easy to slip into this thinking, but it’s just not the case.

You’ve got to sort of look at it this way, if you knew the person you were interested in was going to break an arm or was blind in one eye, would you be any less interested? No, of course not.

When they say it’s what’s on the inside that matters, nobody is thinking about working parts or faulty livers. They’re talking personality, humor, charm, all the things that make you into you because, let’s face it, if you live long enough everyone’s going to need some spare parts and everyone ends up looking a bit like a raisin on rinse cycle.

Drinking

As to drinking, well, the jury is out and the choice is yours. Some hepatologists (a liver doctor and a strongly recommended member of your health care team) say a drink once in a while is okay while some others say to never indulge and all agree that if you’re on narcotics, then alcohol is never on the menu.

But if you’re in a situation where alcohol is the name of the game, there are ways to fake it in a society where not drinking can sometimes take courage. If you don’t want to bust out with the whole I-have-a-liver-disease-am-on-meds, etc. thing, hold a friend’s empty. Order a virgin rum and coke. Get orange juice and just call it a Sunrise. Offer to be designated driver. Play the bet card. Tell nosy or pressure-y pals who you don’t want to go into the whole story with that you made a bet with someone you won’t drink for a whole month. The point is that PSC doesn’t mean Please Skip Clubbing, it just means Please Sip Cautiously.

Sex and Fertility

Sex is going to play a big part in all of our lives whether we’re smug marrieds and 35 or just out of the nest at 19. When to have sex and with whom to have it are up to you, your morals and the amount of after-school specials you watched in direct correlation to the amount of Gossip Girls and Melrose Place episodes watched.

One of the top sex questions among 20s/30s PSCers is whether or not performance will be altered by PSC. I’m sorry to say in a large number of cases, the answer can be yes. Exhaustion can be a big X on the way to the big O. Low energy is a part of the fatigue monster and with the exhaustion can go your sex drive and/or interest. So, if you’re feeling a bit low on the mojo, you’re not alone and there is help out there. For men, erectile difficulties can also occur as can, in rare cases, an increase in estrogen that can cause some breast growth.

But before you freak out, this is not 100 percent the case and there are medications that can help if you find yourself up this creek without a paddle so to speak. For women, sensation can be reduced from medications and there is some question about fertility. However, although there are doctors who swear that female PSCers can’t bear children, there are plenty of PSCers who have and are now proud parents of healthy, happy, PSC-free (thank the heavens) children.

With regard to fertility and pregnancy, PSC has not been shown to have any effect on sperm count or sterility in men. For women, both fertility and the ability to carry a child to term may come into question. Young PSCers in early stages of the disease are sometimes advised to freeze embryos for later use or surrogate use. All pregnant PSCers are advised to seek a high-risk OBGYN.

With regard to the pregnancy itself, there seem to be two conflicting camps. Some pregnant PSCers find their pregnancy to be almost like a salve to their symptoms and feel like they’re in a remission while others have such an exacerbation of symptoms (itching seems to be the one most talked about) that pregnancy is quite literally the worst they’ve ever felt.

With regard to the children of PSCers, babies born to PSC moms may have to go through withdrawal depending on Mom’s stage of the disease and what medications you and your doctors agree on. For male PSCers, obviously, this wouldn’t apply.

As to whether or not to even start a family, well, that decision only you can make. It is important to note, however, that as of yet there has been no proven genetic link to PSC. While PSC is/can be life shortening, there are no guarantees in life. Sure, you could die from liver disease, but you could also die from stepping off a curb or falling down some stairs. In short, life expectancy is a fear many PSCers face, worrying they won’t be there or be able to care for their children. It’s a real consideration and it’s an important one but just bear in mind that no one is guaranteed the right to live 100 years and don’t let the fact that you have PSC steal your dreams of parenthood without at least putting up a fight.

Lastly, keep in mind that the majority of these issues can be corrected or modified when discussed openly and honestly with medical professionals.

How To Tell

Dating: As to dating and how and when to tell someone, it’s a choice you have to make. It’s not fair and it’s usually a bit awkward, but it must eventually be done for a relationship to progress.

Some PSCers like to be open from the beginning so they don’t get attached to someone who “just can’t handle the truth,” to borrow a phrase from A Few Good Men. Other PSCers don’t want to put it all out there right at the start. There’s no wrong choice. For many, the third date is now known as THE date—and not solely for the classic reason.

The thing is, unlike Jeopardy or Wheel of Fortune, there is no right or wrong. If you’re not comfortable until your 8th or 9th (date, probably not month) then that’s all right too.

Professionally: In your professional life, how to tell can be a bit dicey. You want to be honest, but you might not want to share your details with the world and, quite frankly, you’re not sure it’s your coworkers’ business how many colonoscopies you need a year. Again, unless the choice is taken out of your hands by a company physical or a boss that calls you into the office to ask why you’ve been falling asleep at your desk or scratching yourself against the walls like a big ol’ mountain lion, it’s your option when and how to tell.

There’s no wrong way to do it, but preparedness is key. If you’re telling because you know your illness is affecting or soon will affect your performance or you need multiple absences for labs, procedures, appointments, whatever, you’re going to have to make your reasons known.

Look into things like FMLA (Family Medical Leave Act) or SSDI (Social Security Disability Insurance) and the like. If you think you could be more effective at your job if you worked three days at the office and two at home or had a split shift, suggest it. You cannot be fired for being ill. It’s against the law. But if you just walk in and say I’m sick and I need accommodations made, it’s best to know what you’re asking for. You may also want to discuss information limitations (who gets to know what) with your boss and ask if there’s any paperwork you need to file (notes from doctors, etc.).

If you’re applying for a job and your illness truly does not affect it, most would agree that there’s no need to tell. After all, an interview is all about presenting your best assets for the position. Think of it like this, you wouldn’t walk into an interview and tell the boss that you spend all your free time playing solitaire or compulsively checking your Facebook page anymore than you’d tell them that you color your hair. What doesn’t affect your work performance doesn’t affect them.

Family and Friends: Family and friends can be a difficult one. Some people don’t react well to illness and they remove themselves from your life. It’s hard. It hurts. It sucks. It’s their loss. Other people you never expected might be the ones to step up to the plate and show you that they’re the real thing.

The only thing you can do is be honest and open and allow people their space to deal and a part of that is answering questions. For children, it’s important to reassure them that the fact that you have PSC does not mean that you’re going to die or disappear tomorrow. It does not mean that you’ll even necessarily look any different, just that you might be more tired or ouchy or need to visit the doctors a bit more. Depending on the age of the child and their ability to deal, you can always provide clearer or fewer details. For friends and grown-up family, the process is much the same.

Questioning is one of the ways people understand things that they can’t understand and you need to be prepared to answer things and to let people know you’re still you. It’s up to you how much you want to share. There’s no “right” amount. You may have symptoms; you may not. If you want to discuss organ donation and how important it is in saving lives, by all means do so; it’s an important message that so many need to hear.

Realize you may have to remind others what you need, whether it’s help watching the kids so you can rest or reminders not to coddle you since you’re still a functioning adult (this can be especially difficult for younger PSCers whose parents tend to go into overdrive!). Regardless of whom you tell and when you tell them, it’s vital to remember that just like you need time to process the new version of you, so do those you love.

Job And Career

Whether you’re just in college and planning what to do with your life, applying for your 1st or 5th job or working 40-hours a week changing the face of your field, there’s no reason to let PSC steal your thunder. If you feel well enough to work, there is no reason not to continue doing so. In fact, there may be benefits. If your job offers insurance, take it! Working may help you feel more normal and give you something to focus on other than your illness and connections to the world that are sometimes hard to come by for those of us who become too disabled to work and I don’t know a single person who doesn’t enjoy getting a paycheck. If you’re in college and just trying to decide how to dedicate your life, know that PSCers attend college every single day. There are PSCers in law school, in medical school, in film school. The sky, your body and your interest is the limit.

Just like we discussed a bit in the How to Tell section, there may be times when you don’t feel up to working or going to class and your body’s not taking any arguments (and we’re not talking about a stayed up way too late watching a True Blood or Three’s Company marathon kind of a thing!).

When/if you suffer a cholangitis attack or a hospitalization or something else that makes it impossible for you to function the way you need to, do remember that there is help available. Whether you need to lighten a course or workload or take a more semi- to semi-permanent action, there may come a time when you have to let someone in on what’s going on.

How much you share is up to you but it is important to know that there are people who want to help and it’s your right to get the help you need whether that means postponing college courses and taking a temporary incomplete or something along the lines of FMLA (Family Medical Leave Act), Medicare, or SSDI (Social Security Disability Insurance), etc.

All are parts of the we-can-help puzzle if and when you need a helping hand. Know what you want and need. Plan ahead. And it’s always your choice as to whether or not you want it broadcast throughout your college or company. You may find that you like the extra support or you may find that you feel like an exhibit at the zoo. Make your intentions known.

Life Expectancy

First and foremost, PSC is NOT a death sentence. Yes, it does have some ramifications and it is smart to plan for your future and a time when you may be incapacitated due to illness or transplant but it does not mean that you won’t live into your 60s, 70s or beyond. Some PSCers develop symptoms right away and others go for decades without experiencing much more than an occasional blip in the road.

They used to say that life expectancy for PSCers was approximately 10 years from diagnosis. Now, they’re saying you’re more likely to die with PSC than from it. That’s a huge step. There are PSCers out there who have lived with PSC for 10, 15, even 20 years and doctors and researchers are working all the time towards better treatments and a cure. The thing about PSC is that you could go from a Stage 1 to a Stage 4 in a matter of months but you could also stay at a Stage 1 for over a decade. You may experience symptoms. You may not. For a link that describes the stages of PSC, click here. 

PSC is so incredibly individual. It’s one of the things that drive the patients, doctors, and researchers all a bit nuts. So, be wary in your reading the internet or of anyone who tells you you only have ten years to live. Yes, PSC is scary. Yes, PSC is serious. One thing PSC isn’t is an immediate summons to the great beyond.

So embrace your life. Live every moment like it’s your last because you want a full, rich life and not because there’s a shadow over your head. I mean, shadows overhead may make for lovely song lyrics, but not for a way of life.

Whether you have questions on sex, dating, work, college, drinking or the like, PSC Partners is here for you and we encourage you to keep the conversation going. So ask us your questions. Join us at conferences. Hop on Facebook. Make every single one of your dreams come true. You may feel all alone out there, but we’re here, together in the fight, whatever it takes.


Personal Story

It's all about the nap
It’s hard enough to be in your 20s and 30s. Everyone tells you that they’re the greatest times of your life: you leave home for the first time, you find a job, contemplate starting a family with that special someone, etc. It’s a lot for anyone to deal with. And then you add PSC. Wet blanket, anyone?

Just at a time where we’re supposed to be exploring ourselves, going out, meeting people, we PSCers face an energy crisis.

In our 20s, we’re experiencing college, leaving home and living on our own for the first time. It’s a time to go wild, to be free to try a million different things on the path to finding out who we are. You’re supposed to fall in love with all the wrong people, shut down bars and parties, hang out at diners until the wee hours of the morning.

Only problem is, you can’t seem to stay up past 8:00, you’re so tired that holding a conversation is tantamount to climbing Mt. Everest and the only bedroom activity you’re interested in involves you, your comforter, and some nice long Zzzzs.

As to those trips to the local bar, well, you’re pretty sure eventually somebody’s going to notice that the only drink that ever touches your hand is an orange soda or a rum and coke minus the rum. And pick-up lines: “Hi, I’m Jack, I can’t drink, I feel the need to sleep for hours on end, I itch in the oddest places and, oh, yeah, I have an incurable disease that will most likely lead to transplant. How about I buy you a coke?”

"Normal"

In our 30s, we’re supposed to be settling down, solidifying our careers, making lifelong commitments and starting families. Our peers are happy to trot along to the local bar for a quick pint and not make it home ‘til five past midnight while we’re struggling to stay awake for the 7:00 news or fighting our urge to just let the kids forage in the pantry for whatever they may find and call it dinner surprise.

And that’s just for those of us who even have the energy to work, leave the house or have kids.

A quick drink with the boss seems like the road to promotion, but how to explain why that’s just not quite possible without giving your boss details best left private or being labeled a recovering alcoholic or prude. And let us not forget the romantic side of things. First, we have to have the energy to go out and meet someone, not to mention hold a sparkling conversation if and when we do.

Then, that partner has to remain unfazed by the whole transplant thing and, on top of that, be more than a little understanding when we’re just too tired to be in the mood. If you know someone who fits this description and has decent health insurance, by all means, send him my way and check to see how many siblings he has for the rest of us out there.

Here’s the thing, it’s cute to have nap time when you’re in kindergarten. It’s fine for execs to power nap in the afternoon. It’s not so fine when you’re so exhausted all the time that your version of a nap lasts three or four hours and you’re still exhausted upon waking.

So, what’s a PSCer to do? Do we proudly wear Ts that shout slogans like “I ♥ Naps” or warn our dates, spouses, and friends that if we fall asleep on them it really isn’t the company? Should we all hang out with narcoleptics so they just won’t notice?

I guess there are no easy answers, at least none that I can come up with at the moment and it is getting close to nap time . . .

Prepared by Sandi P.

This article appears in the Fall, 2008 The Duct.

To join a global group of PSCers and caregivers for social connection, education and sharing, check out Facebook at:

To join the group go to facebook.com and type in or click on the link above. To find other PSC Facebook groups, click on the info tab at the above address.