young adultsThe following is excerpted from a fall 2009 Pathlight article by PH patient Katie Tobias.

You take a million pills a day. You have a tube coming out of your chest or up your nose, attached to one machine or another. Breathing treatments are a part of your daily routine.

Living with a rare life-threatening illness is difficult in its own right, but fighting for your life at a young age, when your biggest concern should be what to wear for that hot date on Friday, is beyond words. All the medications in the world only fight half the battle — the easy part. So, how do you cope with all this and still feel “normal”?

Read about young adult issues 

Check out these resources, which address issues of special importance to young adults, or read on for more suggestions from Katie for redefining life with PH.

Redefine your idea of “normal”

Feel whatever you need to feel 

Every emotion is legitimate. You are entitled to good days and bad, fits of rage and floods of tears, foggy patches of confusion so thick you don’t know which end is up. Holding it in and just going through the motions doesn’t help anyone.

Let yourself grieve for the way of life you’ve lost. You have to or you will never be able to embrace the life you have in your hands. Be patient with yourself as you discover the “new” you.

Live in the moment

Often, it’s those whose hearts struggle to beat who love more fully, laugh more wholly and live like they have nothing to lose. This will definitely take time, but it will come. You can’t go back and change the past. The future is uncertain, so all the endless “what if” questions will only keep you from living now, doing what you can with the time you’ve got.

Make a list of everything you want to do in this lifetime.

It can be anything from getting a mohawk to walking on the moon. Then start brainstorming how you can now realistically make those dreams come true.

Get down to the specifics like the costs involved, how you’ll travel (If you’re flying, will you need oxygen?). Tailor some of those ambitions when necessary, but don’t give up.

Don’t let pride get in the way

Take the elevator. Claim the handicapped parking spots. Buy funky scarves to cover your mouth in the winter. Use an unconventional pill case — an M&M’S® MINIS® tube, for example. Decorate your pump case or oxygen tank cover. Design your own medic alert bracelet with whatever beads you want.

Take everything that you feel makes you different and make it truly unique. It is possible to love the “new you.”

Do you have a topic that you’d like to see featured in the Young Adult section of PHA’s website? Email to let us know!


FacebookTwitterInstagram iconLinkedInYouTube

For optimal viewing of, please use a standards-compliant browser such as Google Chrome or Firefox.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
    Privacy Policy    Terms of Use    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2017 Pulmonary Hypertension Association. All Rights Reserved.

BBB Accredited Charity BEST in AmericaCharity Navigator

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.