Why Pulmonary Hypertension Patients Are Often Invisible Patients

An “invisible illness” is a term used for any disease or condition which is not overtly obvious simply by looking at a person.

MORE: 14 invisible illnesses you may not be aware of

Most people with pulmonary hypertension (PH) would be considered an “invisible patient,” meaning they’re considered healthy and able-bodied because they don’t look sick.

However, as this blog post on biomedcentral.com points out, just because a person isn’t using supplementary oxygen or a nasal cannula doesn’t mean that they don’t have a serious lung condition. While many PH patients do require oxygen therapy, many don’t need it and others may only need it during the night or while exercising.

Raising awareness of invisible illnesses like pulmonary hypertension will help improve the understanding of what patients go through and society’s ability to recognize their needs. Many people with PH will have a disability sticker for their vehicle or a wheelchair because they’re unable to walk for any length of time, but strangers who see them getting out of their cars and walking perfectly well may question their need for the sticker or wheelchair.

Even well-meaning friends and family may come to expect too much from a person with PH, not recognizing when the person is too fatigued to do something or not realizing the severity of their illness simply because they can look well.

MORE: The treatment options available for pulmonary hypertension

Pulmonary Hypertension Today 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 another 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.

6 comments

  1. Katherine Pace says:

    This is so true. I am hesitant in applying for a vehicle disabled parking permit as I know that I will be criticised for not being “sick enough to use one”. People often say to me “you look so well” – little do they know that some days I find it almost impossible to breathe normally.

    • Carla says:

      I did finly get one and your right Ppl look at me like she’s walking OK to me why doe’s she need that will let me say this carrying an oxygen tank around on your back or shoulder is harder then you think it is and getting in and out of a truck or car or jeep not easy for sure and ya know you gotta get out and try and walk some time’s I feel like I’m a prisoner can’t go anywhere can’t drive right now always hooked to a tank or hose sometimes I feel like turning around and telling people you want to live like this for a while I’d be more than happy to trade one day maybe two and see how you handle it all.

    • Kathie Transue says:

      I hear you. I carry the hanging placard and my sister and i get some looks,even at the 1icense bureae. I just tell them that my 5 doctors think i need it.

  2. I know exactly what you’re talking about. I feel really uncomfortable when I get out of my car because I don’t look sick. I get all kinds of looks. I always dress really nice and never go anywhere without my makeup on. I look great great! I feel sometimes that I can’t put one foot in front of the other, but I do anyway. I force myself almost every day to get out and I push myself even when I feel so sick and can hardly stand it, but I get out anyway. I push myself every day, and just to get out of bed in the morning is a feat in itself. I also have systemic scleroderma and inactive lymphoma. Every day I wake up I’m thankful to the good Lord that He has given me another for which I’m truly thankful. Each day is a most precious gift and I will live every day to the best of my ability.

  3. Ailsa says:

    I have PH and have numerous other invisible health conditions. I was diagnoses in 1995. I do get a lot of stares and comments. I take a couple of my elderly neighbors to Dr’s, as they go to same GP I do, Never do I get stares and comments, as people assume the parking permit is for them!!!!!

  4. Andrea Rice says:

    I misunderstood this illness because I had never heard of it before. The cardiologist I met said it mirrors allergies and I had a lot of them. Matter of fact, I was so allergic to all that grew where I live I became a prisoner in my own home only venturing outside when the pollen count was low enough that it didn’t bother my asthma.

    Overtime the cardiologist told me I don’t have allergies or asthma and this I didn’t believe. So, he challenged me to stop taking all allergy medicine and sit outside when the conditions are worse, so I did. I sat outside on my back deck and just below are many trees and to my disbelief nothing happened! No watery eyes, no runny nose, no sneezing, no shortness of breath, nothing! Then I got mad and wondered why this chronic illness without a cure was misdiagnosed. Because it is rare and many have it and don’t know it just like me. They are either taking over the counter medicines for allergy symptoms, seeing an allergist as I had been or just dealing with the aggravation on their own.

    I wanted to know more. So I started my own crusade to research everything I could about PH. I found lots of information but not a lot of folks that actually suffer from it. This is when the isolation started. There was no one I could identify with. No one I could talk to. When I look in the mirror I don’t see a woman with PH. I see a woman that is extremely skinny and bony as if I have an eating disorder or a Holocaust survivor. Then I found this wonderful organization in Maryland called Pulmonary Hypertension Association and I reached out to them. I got a wonderful email from a woman named Abby that provided me with all sorts of resources including support groups information, however once I clicked on the support groups I realized none of them exist where I live and became disappointed again. Bigger cities yes, but not a smaller city where I live.

    But there is hope. I can start a support group in my area if I want to and I may want to. Why not? I can’t work, am disabled and would love to get the chance to meet others with the same chronic illness without a cure. A chance to come face to face with other human beings, I can’t wait! My chance to see what another looks like with this illness with hope they feel some of the things I feel would bring me out of being so isolated and into the light of being understood.

    For those of you that do feel isolated or invisible take an opportunity to change the parameters and start a support group where you live. Or find one that exists. The closest support group where I live is 5 hours away.

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