Even With IPF, I’m Still Privileged
Given the various unfortunate events happening around the world, including the evolving war between Russia and Ukraine, I’ve been reflecting on the many ways my family and I are blessed. At times, I’ve been guilty of not realizing my privilege.
I’ve always had the basic necessities, including a roof over my head, nutritious food to eat, warm clothing for the cold Canadian winters, healthcare, and insurance coverage. The same goes for my family. No one has suffered a devastating loss, dealt with serious health issues, or faced significant adversity, such as a war or a natural disaster.
In 2016, I was the first in my family to be diagnosed with a debilitating and life-threatening disease. I felt like I was regurgitating someone else’s sad story when I told my loved ones I had idiopathic pulmonary fibrosis (IPF). Nearly six years later, I’m still not sure whether everyone truly understands the reality of my disease, which includes eventual lung failure.
Facing adversity is always difficult, regardless of privilege. While certain aspects of privilege may not be in our control, such as the family we’re born into, it’s our responsibility to be aware of those aspects and how they shape our lives. I’m learning to recognize the ways in which I’m privileged, but I’m also realizing that having IPF makes me a bit of an outlier among my healthy family members.
Following are several ways in which my disease sets me apart from my loved ones.
In theory, having IPF means I have less time than my healthy cousins. My family understands that I prioritize traveling because doing so might not be possible as my disease worsens. On the contrary, it makes sense for other young adults to prioritize things like buying a home, getting married, or having kids. I never intended to follow that trajectory, but having IPF makes my choice a little more understandable.
As a patient living with IPF, I also deal with side effects of the anti-fibrotic medication I take. No one else in my family has had to take a medication that causes terrible gastrointestinal symptoms. None of them have had to take their medications in the middle of Christmas dinner or ensure their skin is fully protected from the sun while enjoying a beach day.
Having IPF also means that I am immunocompromised and can’t attend family gatherings if there’s a possibility that someone there could be sick. While this may be a minor inconvenience, our family never had to think about these things before my diagnosis.
The pandemic has opened our eyes to the importance of preventing the spread of illness. I recently got very sick with COVID-19 for the second time, and it was difficult for many of my loved ones to comprehend the severity of my situation. For them, COVID-19 felt like a typical cold.
Having a life-threatening lung condition has also had financial implications. While my medication and oxygen supplies are mostly covered by insurance, there are additional out-of-pocket expenses — not to mention the times I miss work because I’ve fallen ill or have to attend a doctor’s appointment. My family has not had to face the same financial burden due to their generally good health.
These differences are small prices to pay for living with, not in spite of, IPF, but they’re still things my loved ones don’t have to think about. It’s a privilege not to have to worry about these health-related issues. Although my challenges pale in comparison to current global crises, they serve as important reminders to check our privileges.
Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Will Willis
I couldn't agree more. Love the article, it's so me.. I wish you all the best. Learning to live with this is far from the worst of life issues. I tell folks that it's ok, I've had a wonderful life, and most of all I'm happy.☺
Charlene Marshall
Hi Will,
Thank you so much for reading my column and reaching out via the comments. Keep up that positive attitude; it's so important in the fight with IPF. Kudos to you!
Char.
Kristina Smith
This is also how I feel. I also had small cell carcinoma lung cancer, a five year survivor. And because I no longer look sick everyone thinks I am ok. It's hard to explain this to people, especially co-workers, neighbors and friends. You don't want to say to everyone, yeah but I still can't go hiking, scuba diving, walk the neighborhood with my friends because I can't keep up. I have IPF. They don't know what it is or understand it. Thanks for your post. It's nice to know others feel the same way.
Earl Robinson
I agree with your comments about IPF being a limiting factor in our lives but our condition could be a whole lot worse. My wife used to refer to me as the EveryReady Rabbit because I was always jumping into the next project. We had a family greenhouse business for 30+ years that involved 5 of our children or in-laws and now things are a bit different. Now that I'm on 10-15L of O2 and am thankful for every breath and have good reason to do a lot of sitting without ANY pain, just shortness if breath, I feel blessed in a way. Not what I had planned but as long as I keep my mind busy helping others, I feel full filled. Try to look at the positive and praise God for where you are. Just think of the people in Ukraine or MynnMar that do not have a roof over their head and struggle for a glass of water much less for food. Count your blessings and do what you can to help others. Blessings
Charlene Marshall
Hi Earl,
Thanks so much for reading my columns and reaching out via the comments. Gosh your points ring true, especially about Ukraine and the importance of counting our blessings for what we still have and can do, you're absolutely right. Kudos to you for taking this perspective as we manage this difficult disease. Thank you for sharing your courage!
Char.
Charlene Marshall
Hi Kristina,
Thanks so much for reading my column and reaching out via the comments. I completely resonate with your experience, and how just because we look well, others' assume we're okay. This is really hard to navigate, but do know you aren't alone. Thanks for writing.
Char.
Tonya Worley
It's so frustrating to me that I find the Medical Professionals involved in my care are asking the same questions I ask. They no more have answers than I do. I find PF or IPF puts me in a category of "Terminally Ill" but unlike Cancer or diseases that have stages and/or identifying symptoms/complications that allows both doctors and oneself to know somewhat "how long" they might live, "what stage" they are in or even 'What should they expect next?", but PF and/or IPF doesn't afford us any advance answers to such questions. My Primary and Palliative Care doctors both say the body and organs being deprived of optimal amounts of oxygen will cause a chain of events as the organs become weakened, affected, and in time stop working. With that being said and what I understand from that is I will die of possibly anything the heart, kidneys, lungs who knows? I get the most information from the internet which can be good and/or bad in regards to such a life depending matter. So to me, the anxiety and fear (of the unknown) are for a lack of a better word "killing me". Furthermore, because I do not look sick or appear to crumble before their eyes, I do not qualify for anxiety and/or pain management medication so I suffer such complications because I appear fine to them. I'm not though. Palliative Care, Pulmonology, and Rheumatology all disagree on whether it's IPF or PF as at one time my labs appeared to show a lot of auto-immune issues, lupus, scleroderma dermatomyositis but a new rheumatologist is saying her labs do not show any connection to the pulmonary fibrosis and guess what? After making this determination, she is retiring and referring her patients out, so here I am in the "unknown fear" again. Can anyone offer me any information or ideas of how best to keep myself sane and not so worried about how to deal with my anxiety regarding this? Thanking you in advance if so. Tonya
Charlene Marshall
Hi Tonya,
Thanks for reading my columns and reaching out via the comments. This disease is often a frustrating one, especially when physicians seem to know so little about it. While it won't ease the difficulty you're experiencing, please know that many important players are looking to change the landscape when it comes to IPF/PF and what doctors know. Are you being seen by a PF Center of Excellence? If not, I'd highly recommend you get involved in one, and the list of them can be found on the PF Foundation's website. They are the best ones to know about this disease, and management of the disease as early as possible is important. You may also find it helpful to connect with other patients who have had a difficult diagnostic journey, as you share.... unfortunately it is quite common :(. Our PF platforms are a great place to connect with others who have the lived experience you might be looking for: http://pulmonaryfibrosisnews.com/forums/
I hope this helps a bit!
Char.
Tonya Worley
Thanks so much for responding back and picking up on the fact I am by all certainty in need of help, such as information regarding PF, TO INCLUDE , emotional support., y MNas it is seeming like "nobody cares". Maybe I get this feeling for the very fact I choose to fight thru the ailments of suffering such as short of breath, fatigue, and no appetite to name a few I refuse to lay down on this desease. So, people (family and friends) tend to even forget I am terminal and in fact, yes I am sick and suffering. I was at the end of my rope over the winter dealing with cold and wet weather, the arthritis and Raynauds disease severe and even Lupus in what I would say active episode as sometimes I don't have issues. With this and the very fact I love Florida, I left NC and moved back to Florida. Currently, I am at a stand still, I have no insurance accepted here so I am needing approval from Florida to activate my disability insurance and In the interim paying out of pocket for medical needs to include medicine so it now appears they don't care either. I know there is a light at the end of this tunnel so please don't let me come across as a real "whiner". I am trying to be grateful and it helps to read stories or blogs such as yours so thank you. I am not currently being seen by anyone as I reported above insurance issues. I have decided when I'm approved here in Florida, I am choosing United Healthcare which it seems will cover anything I need. Can you please further comment on PF Center of Excellence? I will check out the list on the website but any info you or anyone can offer.
Tonya Worley
OH AND YES, I WOULD ALSO BE INTERESTED IN ANYTHING I CAN DO TO HELP CHANGE THE LANDSCAPE OF PF/IPF. So, anything I can do or help do to implement change the landscape sign me up I'm committed to the cause.
Charlene Marshall
Hi Tonya!
Thanks for writing back, and please don't ever worry I'll think your "whining" : this disease is hideous, hard, cruel, etc. Navigating each day with it takes courage, so hang in there and please do try to connect with others' who are living with it, as that truly does help. Hearing the "lived experience" of having IPF from others was invaluable to me. The forums are a great platform for that, so hopefully we'll see you on that site soon.
In terms of insurance and navigating US healthcare, I'm afraid I can't be too helpful there as I am in Canada. It sounds like you're doing everything you can though, and even asking these questions on the forums site (http://pulmonaryfibrosisnews.com/forums/) might be informative; I am confident we have some people on there from Florida!
In terms of PF Centers of Excellence, absolutely, I'm happy to share more information on it. Check them out here: https://www.pulmonaryfibrosis.org/researchers-healthcare-providers/community-engagement/care-center-network ... I don't know if you need a referral or not, I don't think so but it may be worth looking into :)
Take care and keep in touch.
Charlene.
Gil
Charlene,
I liked this article, made me think and appreciate today, the things I can do almost ten years after been told I had IPF. Which you the best.
gil
Charlene Marshall
Hi Gil,
Thanks so much for reading my columns and reaching out via the comments. I appreciate your kind words and glad the column encouraged you to reflect on what you can still do and appreciate each day. Keep up that great attitude!
Char.