Being a Patient Can Test Our Patience

Being a Patient Can Test Our Patience

younger than 30

Everyone diagnosed with a life-threatening disease or chronic illness can have a different experience as a patient. Many factors might cause this, including how involved patients are or want to be in their medical care, the expertise of their physicians, and how rapidly or invasive their disease becomes. The one thing they might have in common, however, is that being a patient with a life-threatening disease or chronic illness can certainly test our patience.

It is hard to live with a life-threatening disease such as idiopathic pulmonary fibrosis (IPF), because breathing impacts everything else. This illness has no cure, with the exception of a life-saving lung transplant, and to be diagnosed as a young adult is very rare. Due to this, a number of medical professionals are curious to examine why I became sick with IPF in early 2016.

Many others need to be involved due to my age, whereas they might not have been otherwise involved. This includes fertility specialists, for example. Some of these conversations are really hard to have, and not all medical professionals are sensitive to this. It is hard to have one medical professional disclose that my option of having children might disappear post-transplant, but that I must wait to speak with a fertility specialist to confirm this. And the timeframe to get an appointment and seek out those answers will be over six months away.

While I have little to complain about regarding the Canadian healthcare system, sometimes the wait to discuss time-sensitive and emotionally overwhelming issues can really test my patience. This is just one example when I have felt impatient and needed to remind myself that many other patients are receiving care for diseases far more advanced than mine. However, at times it is hard to remember the importance of having patience as a patient.

Here are some other challenging times when I have had to exercise patience as a patient with a life-threatening illness:

  • It is rare that my respirology appointments are ever on time. In fact, when I am driving to my appointment, I often don’t stress if I run into traffic or construction that will delay me briefly, because I anticipate my appointment will be delayed. As a classic “type A” person, I always strive to be on time — or even early — and this has taken some getting used to. However, unless my appointment is the first or second one in the morning, I know I won’t be going in on time and will have rushed to the hospital just to wait in the waiting room. This really tests my patience! I know the clinic is very busy, and there are higher-priority patients to be seen. That said, I struggle with waiting excessive amounts of time to see the doctor only to spend a very brief period with her. I know that if I needed more time she would give it to me to answer questions, etc., but most of the time it is a long wait for a very short appointment.
  • Due to my IPF, as well as the medications I have tried to help slow my disease’s progression, I now have other medical issues that require attention. Since breathing is such a critical function of life, other organs can be affected by lung disease either from oxygen-deprivation or the medications used to treat the primary disease. Both have unfortunately happened to me. I have had some systemic issues arise, including cardiac concerns, and rheumatology and nephrology involvement. This means that my IPF has impacted other systems and organs in my body, all requiring a medical professional’s involvement and even more appointments. I am impatient enough as it is spending time in and out of the clinic, in hospital admissions, and at doctor’s visits. Adding to the number of specialty appointments really tests my patience. I know these are important, and I am grateful to the professionals who are dedicated to managing and improving my health. However, I am entitled to feel impatient when I am spending so much time dealing with my disease while my friends are out enjoying their last year of their 20s.

I want to state again that I have little to complain about when it comes to the Canadian healthcare system. But it is often difficult to be a patient with a life-threatening illness for many reasons. One of those reasons is how often our patience is tested with various appointments, waiting for results, or when it feels like our bodies betray us due to our illness.

Have you ever felt your patience was being tested as a patient?

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

7 comments

  1. Cynthia Lara says:

    You hit the nail on the head. I pray for more patience and self control, daily. Starting everyday, frustrated with my own limitations, struggling to make it from point ‘A’ to point ‘B’, moving like a sloth, just to get where I’m going on-time. Then, everyone seems to be so busy trying to get you in and out. GRRR… it’s like, the Dr. Is there just a moment and gone. I’m like, but well, uh yes, but is there any… I have a list??? Then I just wish I could scream, can someone listen to me PLEASE!!! I won’t have another appointment for 3 months! I’m just so tired. Maybe it’s me? Am I being selfish or unrealistic? All I know to so is pray.

  2. Paula Caravella says:

    Like you, I am a type A person. Nothing ticks me off more if I am running a few minutes late and call the doctors office to say I will be a few minutes late. And they have the nerve to tell me that I need to reschedule!!!! Now if I am going to be a few minutes late, I do not even bother to call. They certainly do not call me to tell me the doctor is running late.
    The one thing I do have a hard time with, is not getting the overwhelming feeling of being all alone. Everyone sees me as a strong one. Doctors constantly commenting how strong I am. They do not see the times, I am not so strong.

  3. Steve says:

    Kudos and ditto to both of you.
    I come armed with a list of questions as well, but am lucky to squeeze 2 into the barrage of info I’m been subjected to. Luckily I can follow a fair bit, I listen and paraphrase it back, in layman’s terms. This will help you cut through the medical jargon used to obfuscate the information. Although more correct, the terms are not common without a scientific background. Adding to my impatience, I get that they are busy, I’d like to be busy again too.

  4. gil says:

    Sorry to hear about wait times, we have enough problems without having to wait for doctors and offices that overbook resulting in long wait times.
    Except for one doctor who was rude and treated me as if I was too dumb to understand him and did not answer my questions, I’ve had good conversations with my IPF doctors. Over the last few years I usually wait less than 10 minutes to get called. For IPF I go to the Palo Alto Veteran Health Care System (VA) as I believe my IPF is due to my military service. For all non related military health issues I go to regular civilian doctors. .
    I, however, know what you mean about patience, when I go see my non-VA doctor(s), I usually wait half an hour or more. Sometimes even after the nurse takes the vitals, I end up waiting another 20 minutes or so and the doctors do make you feel as if they are real busy and you are holding them up. Some people should not be in the health business, at least they should be kept away from patients.

    • Charlene Marshall says:

      Hi Gil,

      Thank you so much for reading my column and contributing your comments. I completely agree: patients have enough to deal with without excessive wait times due to overbooked appointments. Sometimes I feel really bad being angry at my pulmonologist because he is so thorough and examines his patients very well, so I appreciate that about him but having to wait in a germ-filled environment is really anxiety provoking for me. Overall I have had a similar experience as you as well; most IPF Doctors have been good and very thorough. Sorry to hear about that one experience you had, that sounds awful and shame on that Doctor! My column actually came from both my experiences of needing to be patient at appointments, but I also felt really bad for this woman who was using small 02 cylinders and went through two of them while waiting and that was all her daughter brought. I was really impacted by the fear in her eyes when both cylinders were nearly empty, because no one would have thought that her appointment would take so long. It was really sad, and I am sure it was terrifying for that patient.

      Thank you again for sharing your experiences, and I hope your appointments continue to go well and that you’re always seen quickly. It sure helps us feel better about having to be there in the first place, doesn’t it?

      Cheers,
      Charlene

    • Charlene Marshall says:

      Hi Wayne,

      Thank you for reading my column and for posting a comment. I am very sorry to hear of your diagnosis; this can be such a scary, tough and emotional time with many questions running through the patient and caregiver’s mind. I remember it being a time of so much uncertainty, fear and anger, but I assure you it does get better. I’m so glad you’ve found Pulmonary Fibrosis News. When you’re ready, I’d love to invite you to join the new PF forums, which can be found here: https://pulmonaryfibrosisnews.com/forums/ . It is filled with other patients who are wonderful, and I was actually just replying to a wonderful woman who posted on the forum about living with IPF now vs. when diagnosed, and perhaps reading about this might be helpful for you? Either way, please know that you’re not alone and feel free to reach out any time.

      Charlene

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