5 Tips To Be Your Own Advocate

1DISCLOSE PH ON YOUR

OWN TERMS. Disclosing that you have pulmonary hypertension (PH) is a personal choice, says Janessa Curnow, of Grand Rapids, Michigan.

Janessa was diagnosed with pulmonary arterial hypertension (PAH) in 2013. Tell your employer or future employer about your condition on your own terms. If you are interviewing for a new career opportunity, you can ask about workplace accommodations and accessibility without providing the details of your condition, Janessa says. Employers are legally required to provide reasonable accommodations for employees with a disability. When you decide to share that you have PH, talk to the human resources department, Janessa recommends. 2 ASK FOR HELP AND ACCESSIBILITY. Let people know when you need help, says teacher Katie Cates of Shakopee, Minnesota. Katie, who was diagnosed with PH in 2012, says most people will understand that you may need extra assistance. If they don’t understand, it’s not your fault. Accessible parking spots, bathrooms, mobility devices and oxygen aren’t disadvantages; they level the field, Janessa says. Those accessibility tools allow you to do more, so it’s OK to use them to your advantage.

TIPS TO BE YOUR OWN ADVOCATE

3UNDERSTAND REST CAN

BE PRODUCTIVE. Your worth isn’t determined by your productivity, says Nicole Northrop of Orlando, Florida. Nicole, who was diagnosed with PH in 2010, says rest is necessary, and you shouldn’t feel guilty for taking time to recover. With PH, you might need to reprioritize and redistribute your energy, Janessa says. If you feel tired, it’s OK to say no to requests and invitations, Janessa adds. You can’t help others if you don’t help yourself first, she says.

4LOOK FOR LOCAL OR VIRTUAL ADVOCACY

OPPORTUNITIES. You don’t need to travel to Washington D.C. to become a PH advocate, says PHA board member Colleen Connor [See story, Page 9]. The Pulmonary Hypertension Association Advocacy

Action Center makes it easy to advocate on issues critical to the PH community, such as increasing research funding and protecting insurance coverage. PHA provides a customizable letter you can send directly to Congress. Also, look for opportunities to connect with your representatives in your state.

5SHARE YOUR STORY.

You can advocate for yourself and others sharing your story like PH advocate Mike Naple [See story, Page 18]. Advocating through storytelling is when people bring their experiences to the table to change policy, Mike says. You can make change by sharing your PH journey with Congress on Capitol Hill, but you can also make a difference by sharing your story with a neighbor or members of the PH community. Advocate by sharing your story in PHA’s Right Heart Blog at PHAssociation.org/get-involved/ share-your-story.

You can make change by sharing your PH journey with Congress on Capitol Hill, but you can also make a difference by sharing your story with a neighbor or members of the PH community.