I Am What I Am Because of PH

By Kiara Tatum

The Latin proverb says, “Sickness shows us what we are.”  Like the proverb, pulmonary hypertension has taught me exactly who and what I am.  My life drastically changed since the onset of PH symptoms 7 years ago.  I graduated from college and started my career, and then my losses began: financial stability, friends, my home, my car, control and independence.  However, my diagnosis of PH has many positive outcomes as well as negative.

I’ve been on this rollercoaster ride of loops and upward and downward slopes.  Before my diagnosis, I thought I knew what and who I was: a licensed social worker, a daughter, a sister, an aunt and a friend.  I exercised regularly with a trainer and ate healthy food.  My plan in life was to open a private practice and focus on psychotherapy for adolescents with emotional and learning disabilities.  After my diagnosis, I had to overcome many challenges and obstacles.  I slept on a futon in my mother’s living room.  We moved to a bigger apartment, but then I shared a bedroom with my little sister and later-on, with my sister and nephew.  My income went from a good salary to less than half that, and then I had no income for months.  But I still had to pay medical bills, an electric bill, car insurance and other bills.  I was depressed, angry and felt like I was nothing.  What I didn’t expect was that this PH journey would be good for me.  

I learned what I am from PH,  I am strong;  I have the strength I need to get up every day and take medication, to deal with the not so good PH days, and to be okay with having PH.  The strength I gained from rebuilding my life, a different life.  No more sleeping on a futon or sharing a bedroom; because I moved to my own apartment and I sleep in my own room.  I receive Social Security Disability Insurance with Medicare and supplemental health insurance.  I also teach as an adjunct instructor at my local community college.  I may not be able to climb Mt. Everest, but I have enough strength to hike to Stone Church in Dover, New York.  This strength I have allows me to overcome any obstacle such as heart failure that PH puts in my path.

Kiara with mom, niece, and nephews

My faith deepened.  I learned to rely more on God for my strength and guidance.  His strength and power gives me strength and provides hope when I’m weak, tired, depressed and angry.  My priorities in life have changed from self-focused to other-focused.  I share my free time in service for others such as volunteering in my community, being a support group leader for PH patients, etc.  I also realized that I have more support than I thought, and I formed stronger bonds with family and friends.  My mom, sisters, nieces and nephews have been there for me through the hospital visits, doctor’s appointments, but also through the fun days of family outings.   My nephews and nieces carry those heavy oxygen tanks for me, attend my PH support group meetings, and we spend quality time together.  Staying in contact with close friends is important to me no matter how far away those friends live; Facebook and texting help.  I created new friendships, “phriendships.”  I met and talk to people with PH from all over the world, through PHA conferences, support group meetings, Facebook and even focus groups.  My “phriends” and I go through similar experiences, so we empathize with one another and don’t have to explain PH. 

A chronic illness changed my life, negatively and positively.  What about you?  What are some positive changes PH has brought to your life? Comment below.