Today I was so out of breath walking to the library on my college campus in the wind and cold that once I got inside the doors, I just collapsed in the entryway and sat there on the floor panting for awhile. I watched people come and go through the doors, some giving me looks, others just passing through. I used to be embarrassed about things like this… sitting down in the middle of a store because my legs hurt from walking, or running into class late, panting so loudly I’m sure the whole room could hear.
I’m not embarrassed anymore, maybe because I’ve toughened up to the weird looks and snarky comments. Still, sometimes it gets to me a little. I’ve had people tell me my central line is gross. I’ve had guys break off relationships with me because they found out I couldn’t have kids. I’ve had friends turn away at the beginning of a friendship once they find out I could die because they don’t want to get attached. It’s like, “Hey man, I get it…” but at the same time, I can’t help feeling hurt. I didn’t ask for this disease. I didn’t ask not to be able to have kids, or to have an IV in my chest, and I sure as hell don’t want my life to be cut short because of something completely out of my control.
But this is our reality. Those who want to judge us and put us down for having pulmonary hypertension aren’t people we want in our lives anyway. I hope all of you are able to find people who love you and care about you despite your disease. I know I have an amazing group of friends and family that are supportive, loving, and understanding. I don’t know what I’d do without them really. My boyfriend once told me that having PH is kind of like a “good people detector.” The ones who are genuine and caring will stick around, while the shallow jerks will just walk away.
Don’t ever apologize for your position. When people tell you that you’re gross or weird, just ignore them, or have some kind of witty comeback to whip at them. I refuse to let their words bother me anymore. When it’s hard you can always turn to your friends and family for support. Don’t feel badly about stopping for breath…-even if it means sitting down in the middle of the grocery store. Don’t feel badly if your pump alarms in the middle of a lecture or performance. Don’t let uninformed people get you down, and if they are being really rude, maybe the best comeback is to explain to them what pulmonary hypertension is in a really nice way… they’ll probably regret how rude they were. Maybe next time when they approach someone they won’t be as offensive, and then there’s one more person educated about this disease! Accepting PH in my life has been challenging. For most of my journey with PH, I’ve tried to deny that I have it, and always felt embarrassed and scared trying to explain it to anyone. By trusting myself I was able to get to the point where I have everything I need to take care of myself: family and friends who support me, medical professionals I trust, and an inner strength that keeps me afloat when strangers are looking at me funny. Once you accept yourself and the new you with PH, it is strengthening and makes daily events less stressful. Stay strong everyone, and don’t apologize for what you need to do to get through the day!
Strength (13) Kiara Tatum (12) pick-me-ups (8) down days (7) friendships (7) hope (7) Generation Hope in action (6) active (6) Activism (5) PH (5) Conference (4) PH awareness (4) PH journey (4) anger (4) PHA Programs (3) Sean Wyman (3) Sylvia (3) death (3) journey (3) After Dark (2) Diagnosis (2) Hannah Lahmeyer (2) Melanie Kozak (2) Michelle Joy Guerrero (2) PH at Work (2) PHA mentors (2) activities (2) advisory board (2) bloggers (2) film (2) phriends (2) spring (2) Brittany Riggins (1) Colleen Brunetti (1) I.V. (1) Insurance (1) Kevin Paskawych (1) Kiara (1) Leigh McGowan (1) Love (1) May (1) Melanie (1) New Year's resolutions (1) Shawna Jenkins (1) Suzanne Kenner (1) Vacation (1) Valentine's Day (1) change (1) coping strategies (1) coping with chronic illness (1) depression (1) diet (1) dreams (1) fear (1) food (1) fundraising (1) good health (1) healthy eating (1) heart month (1) life (1) long-term survivor (1) medical (1) meet up (1) nutrition (1) phriend (1) plans (1) positive effects (1) reflection (1) support (1) support group (1) volunteer (1)