An Open Letter to My Family

Life is tough. Living with pulmonary hypertension (PH) and other illnesses impacts not only my life but my family’s lives, too.

I have touched on this topic briefly in previous columns, but I don’t think I have shared just how much PH impacts us as a family. No matter how much I try, I am not the same person that I was before PH.

Today is my husband’s birthday. Happy birthday, Boo. I could not have made it this far in my PH journey without you. You are my provider and caregiver when I need extra help. Some days, I think you would breathe for me if you could. You have been at my side through the years, which has not been an easy feat. PH takes its toll on a marriage, more than one can imagine. But I am grateful that you are so caring and ready to tackle whatever comes our way.

To my adult daughter, who is married now: I realize this hurts more than you will even acknowledge. Especially when my mind is all over the place, and I am far from the mom that you have grown to know and love. I hate that you see me on my bad days. Mothers should be the strong ones, but I think you are stronger than I am on my strongest days.

To my son-in-love, whom I adore: I am grateful for you. You are an answer to my many prayers for my daughter, KK. You are the kids. You should not be worried about me. Chronic illness can change family dynamics, which is something I have witnessed in our family on an ongoing basis.

To my parents: I would never have imagined that I would cause such heartache for you, especially Moma (what we call my mom). I hear in your voice how your heart breaks when you hear that I am in the hospital or not feeling up to par. You are always there, no matter when I call.

As a mom myself, I know you live for your kids. It does not matter how old they are. You are an amazingly strong and loving woman. I know it must be difficult to watch me go through the changes associated with PH. You should not have to worry about your daughter having multiple health issues.

Sisters are a blessing, and I am blessed with two beautiful sisters. As with all siblings, we have had our ups and downs. Whether you admit it or not, the past 15 years also have been tough on you both. I cannot imagine how it must feel when you hear and watch your sister going through the many ups and downs of PH. I realize that many things have changed in our lives as we have grown and transitioned into adults. Still, we are sisters, and I love you both more than you know.

Change is inevitable for our family. The unknowns are the toughest. I have changed in more ways than I ever thought possible and have certainly found my strengths and weaknesses. Side effects of medications and symptoms of PH only add to the mix.

I’ve realized that people react differently to situations. I often feel that I am a burden to my family. Maybe things would be different if I were not “sick.” I would not always be the “sick” sister. My health issues impact my family, often more than I realize. But I also know that, through PH, our family has been made stronger for the most part.

I am grateful for everyone in my family. Thank you for not giving up on me. Thank you for adapting to a “new normal,” whatever that may be. Thank you for showing me love and support when the world inside my body is crashing down. Your love and support help me to stay hopeful and keep going, even on my worst days. Words cannot express my gratitude for every one of you. Together, we continue the PHight against PH.

Whether you live with PH or another chronic illness, expect changes. Family dynamics can change at a moment’s notice. I think knowing that helps when changes occur. Our brains are not wired for so many unknown changes, which is why people living with a chronic illness have such a difficult time adjusting. Chronic illness introduces ongoing unknowns.

The Pulmonary Hypertension Association offers some tips on maintaining healthy relationships, many of which I find relatable. Do you have any tips you’d like to share? Let me know in the comments below!

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.