The Best Laid Plans
When you are in your 20s and 30s, life is overflowing with possibilities. Young adults have big plans, but, sometimes, life just doesn’t turn out the way you intended.
Live Life to the Fullest: Nowhere in those plans did you think you would have to deal with a rare, chronic illness. PSC is life-altering, but that doesn’t have to mean life-ending.
PSCers live fulfilling, productive lives every single day.
- They marry and have children
- They complete college degrees
- They enter and progress in fulfilling careers
- They participate in meaningful events, programs, and initiatives, and
- They live life to the fullest
Challenges: There will be challenges. You will deal with obstacles that others may not understand, but the same is likely true with struggles your friends are facing.
The biggest worries that many young adult PSCers think about have to do with:
- How to tell people about their diagnosis
- Career opportunities
- Children, and
- Life expectancy
So, let’s break these worries down one by one.
Go Out: For many folks in their 20s and 30s, dating is a main part of their social life. However, since most dating takes place at night and may involve alcohol, what’s a PSCer to do? Here are some ideas:
- If you are one of the many who becomes exhausted early in the day, suggest a lunch, brunch, or breakfast date.
- If you are asked out for drinks, respond with a great little coffee place you know.
- A group date can be a great idea, as well. Enlist a close pal who will hold up your end of the conversation if you get tired. Bonus? You’ve got someone there to watch your back.
- Make it work for you. Don’t give up. Go out when you want to!
Be You: Another hurdle many young PSCers face is feeling like nobody would ever want to go out with them. It’s so easy to slip into this thinking, but it’s just not the case. Think of 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. You may have PSC, but you also have:
- and all the other things that make you YOU!
How to Tell a Potential Significant Other: Telling someone about your disease is usually a bit awkward, but it must, eventually, be done in order for a relationship to progress. Many PSCers like to be open from the beginning, so they don’t get attached to someone who can't handle the situation. Other PSCers don’t want to put it all out there right at the start. There is no wrong choice.
To Drink or Not to Drink: Some hepatologists (liver doctors) and gastroenterologists may say an alcoholic drink once in a while is okay. Others say to never drink alcohol. What is your physician's advice for you? All doctors agree that, if you are taking narcotics, alcohol should never be consumed.
If people around you are drinking alcohol, and you feel uncomfortable being the only one not imbibing, these tips may be of help:
- Hold a friend’s empty glass or bottle
- Order a virgin (nonalcoholic) daiquiri or other drink
- Sip a sparkling water with lime
- Offer to be the designated driver (which may greatly increase your popularity)
The point is that PSC doesn’t mean Please Skip Clubbing, it just means Please Sip Cautiously. Alcohol consumption is an important topic to discuss with your doctor.
Sex and Fertility
Sex plays an important part in most people's lives whether they are married and 35, or just out of the nest at 19. When and with whom to have sex is, of course, up to you, but you likely have questions.
Performance: One of the top sex questions among 20s and 30s PSCers is whether or not performance will be altered by PSC. Unfortunately, sometimes the answer can be yes. Exhaustion can play a big part. Low energy may reduce your sex drive and/or interest. Medications may also affect sexual performance. For men, erectile difficulties may also occur as can, in rare cases for those with late stage liver disease, an increase in estrogen that can cause some breast growth. Please don't feel shy to speak with your doctor if you are having issues.
Medications: There are medications that can help. For women, some medications may affect sensation or fertility. These issues should be discussed with your doctor.
Fertility: You may encounter a doctor who implies that female PSCers can’t or shouldn't bear children. However, there are plenty of PSCers who have and are now proud parents of healthy, happy, PSC-free children. PSC has not been shown to have any effect on sperm count or sterility in men. For women, PSC does not seem to reduce fertility. Talk with your obstetrician-gynecologist (OB/GYN) and your hepatologist about your concerns. You can ask for a consultation with a hepatologist or high-risk perinatologist (maternal-fetal medicine specialist) who has a history working with pregnant patients who have liver disease. You may want to ask about freezing embryos for later use or surrogate use.
Pregnancy: Some pregnant PSCers find they feel well during their pregnancy. Others say pregnancy exacerbates PSC symptoms, such as itching. Discuss with your doctors about whether or not you should see a perinatologist who specializes in high-risk pregnancy care.
Children: Medications, such as narcotics, may affect a child at birth.Talk with your OB/GYN regarding all of your medications and their safety when breastfeeding, including over-the-counter medications. For more information, see the CDC website.
How to Tell Others
Professionally: In your professional life, deciding when to discuss your diagnosis in the workplace can be challenging. You want to be honest, but you might not want to share your medical details with those you work with. It is your choice to decide if you want to tell others, and if so, when, and how to tell your co-workers, boss, etc. Legally, you are not required to discuss health issues during a job interview. Potential employers cannot ask personal questions, including inquiries about disabilities, illnesses, or medical conditions.
There is no wrong way to reveal your diagnosis, but preparedness is key. If your illness is affecting, or soon will affect, your work performance, or you need multiple absences for labs, procedures, appointments, etc., you may have to disclose your diagnosis. If so, here are some useful tips:
- Look into things like FMLA (Family Medical Leave Act) and SSDI (Social Security Disability Insurance).
- If you think you would be more effective at your job if you telecommuted a few days a week, suggest it.
- Remember, you cannot be fired for being ill. It’s against the law.
- You may also want to discuss privacy limitations to determine who in your workplace needs to know your health information.
- Ask if there is any medical paperwork you need to file (notes from doctors, etc.).
Family and Friends: It may be difficult to tell friends and family members about your diagnosis. Some people don’t react well when confronted with news of a loved one's illness. Some may even remove themselves from your life. It’s hard. It hurts. It’s their loss. Other people you never expected to be concerned might be the ones to step up to the plate and show you how much they care. When telling those close to you about your PSC, here are a few tips:
- Be honest and open.
- Allow people their space to process the news.
- Reassure them that your diagnosis does not necessarily mean that anything will change in the near future. Although the disease progression is different for everyone, you may want to let your loved ones know that many PSCers live well for a long time. Emphasizing this can be especially important when talking to children.
- Encourage questions, but it’s up to you how much you want to discuss. It is important for you to feel comfortable with the amount of information you share.
- Remind friends and family that you may or may not have symptoms, and that symptoms may come and go.
- You may want to discuss organ donation and how important it is in saving lives. This is a vital message that everyone needs to hear. Click here to sign up for organ donation.
Ask for Help: Realize you may have to remind others about what you need. Know that it is ok to ask for assistance!
Job And Career
To Work, or Not To Work: Whether you are in college and planning for your future or well into your career, there is no reason to let PSC derail or stop your plans. The benefits of working include:
- meeting your personal goals
- helping you feel more normal and giving you something to focus on other than your illness
- developing close, meaningful, and/or important connections
- obtaining health insurance and other benefits
College: Many PSCers attend college. There are PSCers who obtain their degrees and some go on to law school, medical school, or other graduate programs. Talking to other PSCers via social media and at PSC Partners Annual Conference can provide you support and knowledge in how other people have managed to achieve their goals, even if PSC temporarily interrupted or slowed them down.
Limitations: There may be times when you don’t feel up to working or going to class due to PSC symptoms. Listen to your body. If you suffer a cholangitis attack or something else that makes it difficult for you to function the way you need to, remember that there is help available. If you need to lighten your course/workload or take more semi- to semi-permanent action, this could be a time when you need to share information about your PSC diagnosis with others. You may find it helpful to request the FMLA (Family Medical Leave Act). For more information, talk to your employer. There may be a time when you need to look at SDI (State Disability Insurance), Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI).
Living Life to the Fullest
It is always smart to plan for your future. Just as you plan for your education, marriage, retirement, and more, you may want to prepare for your future medical care. Remember, some PSCers develop symptoms right away, and others go for decades without experiencing much more than an occasional bump or curve in the road. Doctors and researchers are working diligently towards finding better treatments and a cure for PSC. So, go ahead and embrace your life!
PSC Partners is here for you, and we encourage you to keep the conversation going. So, ask us your questions. Join us at conferences. Participate in Facebook conversations. Although you may have moments where you feel alone, remember, we are all here with you.
Together in the fight, whatever it takes.
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Find information about clinical trials.