I wish others better understood my invisible battle with chronic illness
My struggles are real, even if you can't see them
Pulmonary hypertension (PH) has its challenges, but they’re not always visible to others. Some days, for example, it feels like a plastic bag is suffocating me. That’s how I described my breathing difficulties when my durable medical equipment company denied me oxygen because it was a “luxury.” Many people struggle to understand my reality because I don’t appear sick.
With PH, even simple tasks like showering, doing laundry, and running errands can be daunting. Yet the judgmental stares I receive when I use an accessible parking pass are disheartening. That’s always a lovely start to my shopping experience. (Hear the sarcasm?) Depending on how I feel that day, I’ll either approach the situation with anger or use it as an opportunity to educate others on PH.
But explaining the severity of this disease is difficult, especially when the symptoms aren’t visible. People may assume I’m lazy or entitled if they’re unaware of my daily struggles. At times, even those close to me have doubted the seriousness of my condition because of how I look on the outside. It’s isolating, and I’ve lost some fair-weather friends.
The invisible symptoms of PH
Even if you can’t see it, I want you to know how PH feels. Every day for the past 19 years, I’ve experienced the challenges and burdens of this often-invisible illness. Some mornings, I wake to find myself entangled in my oxygen tubing. I live with shortness of breath, fatigue, chest pain, and a constant fear of my illness progressing. It’s a weight I’ve learned to carry, but it can be overwhelming.
Some days I feel as if I’m drowning in my own body. My lungs struggle to take in enough oxygen, leaving me gasping for air and feeling like I’m suffocating. From the outside, you might not even notice. But inside, it’s a constant battle.
Despite the challenges, I’ve learned to find joy and meaning in my life with PH. It’s forced me to slow down and appreciate the little things, like taking a short walk on a sunny day or spending time with loved ones. I’ve also found support and community through online PH forums and groups. It’s affirming to connect with others who understand what it’s like to live with an invisible illness.
Dealing with emotional and mental effects
But there are days when the weight of PH feels too heavy to bear. When my body is weak and uncooperative, or I have to cancel plans because of fatigue or pain, I allow myself to feel frustrated and angry. But then I remind myself to be grateful for what I have and what I can do.
I may have a rare disease, but it does not define me. It’s just one part of who I am, and I refuse to let PH — or the judgment of others — hold me back from living my life to the fullest. I may have limitations, but I also have determination and resilience. Even if others don’t understand my struggles, I will continue to PHight for my health and happiness.
For anyone with a chronic illness like PH, know you are not alone. Your struggles are valid, visible or not, and your strength is admirable. Together, we can lift one another up and advocate for better understanding and support for those with invisible illnesses. Let’s change the rare and chronic disease narrative and show the world who we really are.
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Jill Upshaw
You are so on target. Not too long ago , I parked in handicapped parking and a man looked at me and said ,"where's your wheelchair?" Now, I look like crap, I shake, I am on 6L of O2 and very weak BUT the old sarcastic nurse in me came out in full force. I told him that I was in multi organ shutdown and that my chair, my walker and my adjustable bed was at home. And unlike many in a wheelchair that may live long lives because they are in that chair because of trauma, not diseases, I could die tomorrow and that I did not need his approval or permission to live or die as I see fit. His face got red. Since I felt he would never forget me, I asked him to treat others better in my honor and my memory when my time comes.......He never said a word.
Jen Cueva
Great job, Jill! Isn't it interesting how our reactions can change based on our mood? I had a good laugh when I read "the OLD sarcastic nurse", but I bet you were never sarcastic, my friend. Being a nurse myself, I sometimes feel the urge to explain my diagnoses to curious onlookers questioning my parking. Usually, it's older men or people who think age is the only valid reason for parking in those spots or using electric carts.
I hope that man remembers you and never questions anyone else about their disability. It can be frustrating - we don't need anyone's approval to live our lives. Thanks for not only reading my column but also sharing your experience with this "never-ending battle" that only adds to our stress and uses our precious energy.
Take care and hope to see you in the forums soon, my PHriend!
Carol Alexander
Jen you are saying the words that I feel every day. As I was reading it I said to myself someone understands the battle I wage everyday. It made me feel not alone you are such a wonderful person you helped me so much when my Mother died God bless
Carol A
Jen Cueva
Hi Carol, I am beyond grateful to learn that you relate but also now feel less alone. It is exhausting to PHight PH and other health concerns. Ww don't need this extra stress to add to our list of frustrations. Wouldn't life for all be easier if everyone was kind and don't think they need to question our health?
It's my pleasure to help you feel less alone and know you are loved and cared for. Did you have any luck with our new forum platform yet? I haven't seen you pop in much. LMK if you need any help in learning how to easily move around the forums. We've missed seeing you and hope you are managing OK day to day without acquiring any flu or viruses this time of year. Keep us posted.
Again Carol, I appreciate you taking not only the time to read my column, but also leave your kind thoughtful words. Take care, my PHriend!
MamaBear007
Jen, thank you for this reminder of what pulmonary hypertension patients deal with on a daily basis. I never doubted how my son felt, but I know he struggled with those who were as judgmental as those who judged you. Bless you!
Jen Cueva
Hi MamaBear, thank you for not only taking the time to read my column, but also feeling compelled to leave your takeaways. Your son is blessed to have you as his mom, I know you never doubted him. Unfortunately, I'm sorry he too struggled with these judgemental folks and comments, too. It's frustrating enough to try and "not look sick", so many of us can relate.
Take care and hope to see you in the forums again soon. I miss reading your thoughtful and supportive posts. Have a wonderful weekend, sweet friend.