What I Wish My Loved Ones Didn’t See
As a child, I always felt uncomfortable when people expressed sadness and fear. I tried to be strong to keep my family from feeling upset. I remember maintaining a brave face during surgeries and interventions to assure my loved ones that I would be OK.
People have told me how brave I was. But I was hiding my fear. I kept a lot of painful feelings inside because I felt I had to be strong for others. For years, I hid my depression, anxiety, and mental and physical trauma. I struggle to this day with seeing the pain caused by my illness.
Life with pulmonary hypertension (PH) is easier to manage with a dependable support system. Still, I wish my illness didn’t come with so much heartache for those who matter most to me. I wish my loved ones didn’t see me looking physically ill. I wish they didn’t have to wonder about the length of my life or worry about a future they can’t control. I wish they didn’t have to see me through mental anguish and breakdowns.
It has always been difficult for my family to witness my illness. It’s easy for me to hide a pale complexion, dark circles, and white lips with makeup, but the reality is there are days when it can’t be hidden. There are days when it takes too much effort to look well. It’s hard for me when people notice my declining health.
Telling my loved ones that I feel ill is different than having them see what ill looks like. People are used to seeing me with a smile on my face, so it’s hard for them to see the pain and suffering in my eyes. I wish people didn’t have to see me in the back of an ambulance or hooked up to monitors in a hospital bed. I’m sorry they experience fear and worry when I’m at my physical worst.
My loved ones have also supported me through mentally difficult times. Mental health is important to address when it comes to chronic illness. PH can cause anxiety, depression, and panic attacks. I have spent so much time anxious about my physical symptoms and worrying about my future. I wish people didn’t have to see me crying tears they want to stop. I wish they didn’t see the hurt that trauma causes.
One of the hardest parts about chronic illness is witnessing the people I love worry about my health. I notice their fear, sadness, and even anger. I would do anything to stop their worry and pain, and I know they would do anything to take away my pain, too.
There are so many physical and emotional difficulties that I wish my loved ones didn’t see. I am grateful for people who lend a listening ear and a comforting embrace and do their best to help me through emotional pain. I am a stronger person for having them fight PH alongside me, even though they wish I didn’t have to.
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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.
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Comments
Ranolene Pillay
Well said.
My mom was one of the strongest people I knew. And when she was diagnosed with PH, after her health started declining, she hated having us see how much she suffered. I hated that I couldn't do much about her health.
i wish you all the best for the future.
Brittany Foster
Thank you so much. I know how much it hurts to see someone suffer and I hate when people have to see what I'm going through. But I know your mom was so thankful for all the times that you stood by her through the bad times too . So much love to you!
Mary
I completely understand how you feel. I’m 54 and was a nurse for 32 years until I had to go on permanent disability in 2016 related to pulmonary htn, diastolic heart failure and hypersensitivity pneumonitis. I’ve also had Type 1 diabetes since 12y/o. I had my life under control until 2016 when all of this was discovered. I too have tried to be the strength for my family and friends throughout the years. Even when I was going to go under anesthesia in 2026 and I didn’t think I was going to wake up without a ventilator if at all, I tried to hide my fear as best as I could and told my family my wishes to not have a trach tube it be in a ventilator for a prolonged time. I was tired. I still didn’t share with them that I thought that I was not going to make it home. I had to remain strong. Obviously, God had other plans. To this day, I can’t figure out why he kept me here. When I lost my nursing career I lost my purpose in life and have yet to find a new one. Th e dats are long and lonely as my family and friends live their lives. You certainly discover who your friends are when you go through something like this. My family has been there for me but I hate that they see me as incapable of doing things because of my illnesses. I feel like I’m standing in the middle of a room screaming and no one hears me. I know I am loved though. The amount of guilt I experience knowing what my illnesses have burdened them with is immense. On top of that my husband, who was amazing in caring for me both in the hospital and at home felt the burden and wasn’t sure if he wanted to remain married after 29 years of marriage. That was devastating. We are still together but things are different. We both look at life from a different lens and no longer have the same goals. We are trying though. Praying for anyone who has to live with chronic illness.🙏
Brittany Foster
Mary,
Thank you for writing to me. It certainly is a lot of guilt that I feel on a daily basis especially when the ones I love have to be worried about the state of my health and wonder if I'm going to make it. Putting that stress on someone and knowing that they have those worries and that stress is so incredibly hard. I am so thankful for the ones that love me through it, as I'm sure you are thankful for the ones in your life that make this life worth it and special.
Jeffrey Harpp
Brittany, I’m a parent of a 13y/o son Cash who is a PHighter. Seeing the struggles that my son and other children have to go through with PH tears a hole right through my heart and soul. Cash is a brave fighter and hits back at everything this disease gives him. I look at him and see so many things in one look on his face. I see warmth even with blue lips. I see his stead fast determination to make it through another procedure. I see his frustrations with vomiting/diarrhea/pain. I see the fatigue and weariness in his eyes. I see when his body has had enough. I see his sadness in his loss of things he wants to do, friendships to have, a normal life he deserves. His youth however has been stolen from him. His future has been stolen from him. At the lowest times and there are plenty, I will look at his face and see what Grace looks like. Sometimes when we are at lowest we try to find faith. As parents we put on the positive good face to Cash. Just as you tried with your parents. However, my wife and I silently cry due to Cash’s condition and grief for the future he lost a long time ago.
Brittany Foster
I can relate to the pains, both mental and physical that your son is going through and I am so sorry that he has to experience that at such a young age. I know you see his determination and his fight and I am confident that he will continue to push forward and get through each obstacle, even when you question how he can do it. The answer is: we just do. We do it for the ones that help us keep fighting and I am sure you and your wife are those people for him.
Richard Cizenski
I lost my wife to PAH after being diagnosed 5 years ago. She was very tough and fought hard. Our families were a big help. The best gift anyone could give her was their time. A short visit, even a phone call would boost her spirits. The frustrations and pain from the side effects of the meds that kept her going were a problem. She did not make it to our 50 anniversary by 6 months. She is missed and loved. To all of you out there that suffer from PH or PAH God Bless you. They are making great strides in finding better ways to treat this ailment. Hang in there, there is a light at the end of this tunnel. Take your meds, exercise, eat properly and most of all keep your spirits up. Care givers, give them a hug daily. My wife, Julie, would say there is always hope.