Reminding Myself That I Am So Much More Than PH
Hey, y’all, I’m Jen.
I love people. I enjoy talking, writing, and cooking. Coffee shops and food are my jam. I admire my family and friends. Listening to live music or being near the water helps keep me balanced.
But pulmonary hypertension (PH) will creep up when least expected, attempting to steal my identity.
If you also live with chronic illness, do you find that others define you by it? I’m often reminding myself and others that I am much more than PH. Unfortunately, the symptoms and limitations that come with my condition do, at times, take over.
This identity crisis is all too common for many of us in the rare disease community. For example, I write this column about my experiences with PH, moderate the PH News Forums, and do advocacy work for the Pulmonary Hypertension Association. I am a writer and an advocate.
It is common for patients, especially those newly diagnosed, to become inundated with PH. They likely did numerous diagnostic tests and saw multiple specialists before they even received an accurate diagnosis.
It’s easy to imagine how this can cloud the way we define ourselves. But despite PH, we all have a purpose and a plan. Those of us with PH are so much more than the disease. I need this gentle reminder at times.
I get it — it’s not easy when we’re tethered to 50-foot-long oxygen tubing every day. Worrying about our health and medication refills is part of our daily routine. But for me, this is only a tiny portion of my day.
There is much more to me than PH. I am a woman, wife, mother, daughter, friend, colleague, and nurse.
Those of us with PH are like everyone else, with some added struggles. We are not weak or lazy, we are PHighters.
Occasionally, I face this internal battle of defining myself apart from PH. After 16 years, PH has changed me in profound ways. Still, I’ve maintained many qualities that describe me. So have you.
Struggling with identity can be worse when PH symptoms are exacerbated. When I’m dealing with extreme shortness of breath, chest pain and tightness, and fatigue, it’s easy to feel like PH defines me.
With an added punch of uncontrollable side effects from PH treatments, the struggle intensifies. At my worst, I remind myself that PH is only a tiny part of my life. I will get through the crisis and back to my norm.
I’ve found that I occasionally need to take a break from the PH world. This does not mean that I’m not dealing with symptoms or side effects. It means I’m taking a break from social media, forums, and emails. I tend to set my phone on silent and leave my emails unanswered. Unplugging from my electronic gadgets offers me time to rest and reset.
Those within the PH community may feel guilty when taking these breaks. But it’s important to our psyche to unplug and be in the moment. The emails, calls, and updates can wait.
We must continue to support each other as we PHight through our most challenging days. Don’t lose yourself as you are consumed with all things PH.
How do you define yourself apart from PH? Please share in the comments below.
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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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Esther Trice
I have COPD plus PH. It's something that does not upset me so much as COPD. PH is bad but I think COPD is worse. I take a med for PH and I also take meds for COPD. I WAS HOPING THE MED FOR PH would also help with the breathing but it hasn't. I'm hoping I will get on a med that will help with the breathing.
Jen Cueva
Hi Esther,
I can only imagine how difficult it is for you to manage COPD along with PH. I am sorry to hear that your treatments are not helping. I can only suggest from my experience that you mention this concern to your medical team and see if they may want to try a different treatment plan.
Thanks for reading my column; if you have not yet joined the PH News forums, please check out the link and come and join us. I am also a moderator there, and we would love to have you. We are a support group and have some supportive members who have struggled with both, like you.
Cecil Risby
Hello everyone. It seems at times I’m invisible to my family members when it comes to my struggle with PH.
But what I have learned to do is encourage myself daily, that I still can move forward and look forward to better days. Sometimes that’s all you can do, but don’t let it define your life. God bless you all.
Jen Cueva
Hi Cecil,
I am sorry to learn that you feel invisible at times to your family. You are not alone. Many with PH, myself included have found this an ongoing issue. I've given up on trying to educate them about PH, it is exhausting.
Encouraging ourselves is important but we also need support as we travel this PH journey.
I have found that talking to others who have or are experiencing this same struggle is helpful. If you have not yet joined our PH News forums, I encourage you to join. I am also a moderator there, we would love tin have you. It's easy to create a profile and join in on the conversation.
Thank you for reading and for your kind words. Take care and blessings to you as well.
Kindly,
Jen
Darla McCollim
I struggle to NOT being swamped by my illnesses. I was diagnosed with PAH and 6 months later stage 4 peritoneal cancer. I also deal with daily pain from my arthritis. Even some simple pleasures has been denied due to heat, smoke and covid. I feel best when I can accomplish anything. Gathering supplies for a crafting project. I think my new mantra has to be I am more than my illnesses.
Jen Cueva
Hi Darla.
This is certainly an ongoing struggle with those of us with PH. Then add in other health concerns; as you mention, this only makes this tougher. You truly have a ton to deal with at once; my heart goes out to you.
The smoke in your area must be horrible. I hate that this happens, as I know it keeps many indoors. I am happy that you have found crafting that can help you from going stir-crazy.
Yes, you are certainly much more than any of your illnesses.
Thank you for reading my column. I hope that it offers you some hope and inspiration as you deal with all on your plate.
Kindly,
Jen
Rose
Just diagnosed with PH also have COPDJust trying to get past the cost of medicine.Trying for Grants any suggestions thanks Rose
Jen Cueva
Hi Rose,
I realize that the initial diagnosis of PH can be overwhelming. The high costs of medications certainly make it difficult and worrisome, too. But, most medications have a copay assistance program that will help with these extraordinary high costs.
If you have not yet, joined the PH News forums, I suggest that to help support you and others' experiences. I am also a moderator there. I have shared a link that takes you to treatments sub-forums. If you search for the medications you are on, I may have already shared the copay assistance information in the ones that read, "Do you have experience taking Tyvaso?" etc. If your medications are not yet there, you can ask that question or have one of us moderators ask for you.
I hope that this helps. Thank you for reading, and I hope to catch up with you on the forums; creating a new account is simple.