Phases of Being Patient

Phases of Being Patient

It dawned on me the other day that we have different phases of being a patient. I am currently going through the I don’t know how to be a “non research patient” phase. There are many great things about being a research patient, you are doing your part for science, research often leads to discoveries and sometimes cutting-edge treatment. Research by its very nature, is a very controlled and specific process.  When you are not a research patient, care is neither better nor worse, but different. I was looking for an answer to a question today, about the time span that I could have a biologic dosing and a flu shot. This sent em down a hole of googling, journal and monograghs reading. When I was participating in a study, there was a set amount of time that I should wait between taking a biologic dosing and having a flu shot. I found it incredibly frustrating that I could not find this information this afternoon. If I was a current research patient, I could most likely make a quick call. Instead, I was going to have to get in line, ring the doctor’s office and hope that they have an answer.

The other patient phases I like to think I have been in are as follows. If you are curious, I tend to think that I still go between each these phases.

The naive patient

The “naive patient”- I took everything that my doctors said at face value. I did not question anything, I didn’t advocate for myself, I didn’t even keep my own notes. As a patient with a chronic illness, I highly recommend taking an active interest. I was finally fed up and woke up one day, met the most amazing patient advocates and began my journey as a patient advocate.

The “mad as hell at this diagnosis patient”

 
This is a phase that I still drift in and out of. This phases usually occurs after a period of uncontrolled asthma and being in a bit of an asthma funk. In particular, this manifests itself when treatments had failed to improve symptoms and wreak general havoc on my quality of life. The good news is, that I have been able to bounce out of this stage.

The “I don’t trust you at all” patient

This is when there a lack of a confidence in your medical team or support system. I had this particular experience with my first specialist. They told me to be patient and I will be better in TWO Years without much support on how that was going. to occur. This was a major push for me to make a change in what I need in terms of care and my role in it.

The “how can we work together” patient

This usually involves coming to terms that it is going to take a collaborative approach. That working with your team is critical but also be an advocate for yourself.

The ” I am empowered, hear me roar” patient

I am happy to report that I spend most of my time in this phase.  I am generally, active, engaged and generally know when to ask for what I need and participant in the decision about my own care.

What type of patient phases do you identify with? I would love to hear from you.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • Shellzoo
    2 weeks ago

    I think I am in the “I hate being a patient” phase. I hate feeling under the microscope and feeling either ignored or over diagnosed. I would rather not have asthma and not have all the appointments and stuff that goes with it. I listen, I cooperate, I research, I learn but I still hate being a patient.

  • Leon Lebowitz, RRT moderator
    2 weeks ago

    Hi Shellzoo and we hear you! It does seem like sometimes, there is no decent middle ground. As you said, either over diagnosed or ignored. I think it speaks more to one being able to manage their own condition, as much as is feasible, on their own. Wishing you well, Leon (site moderator)

  • janetg
    2 weeks ago

    Diagnosed with asthma at age 70 (!) 6 months after moving to a new area. Began by agreeing with every specialist and taking every drug they recommended (even Xolair with a sticker price of $38,000 a month) until earlier this year. Now I am beginning to argue a little with them and have stopped taking Xolair with no problem (so far, anyway). Part of me though is still in denial that I even have this #*^! chronic disease.

  • Leon Lebowitz, RRT moderator
    2 weeks ago

    Hi janetg and thanks for your post. I know the cost of medications can be exorbitant, but I haven’t heard of the $38,000 / month cost as yet. Was that a typo? Sometimes, the more you know about your own condition, the better able you should be to collaborate with your physician(s), rather than just accept everything at face value. Keep up the good work! Leon (site moderator)

  • robbym
    2 weeks ago

    I have also experienced all of these phases though did not think of it relative to my asthma.

    I have spent more than a third of my life in hospital (I’m 46) and have found it’s the only place I’m ever symptom free. Now I’m in the ”nobody believes asthma can be this serious and there’s no safe place for me in this world so I’ll reluctantly accept isolation, research and pray harder for a miracle before I circle the drain and rot in my protective bubble phase”.

    I have lost everything because of asthma – educational opportunities, careers, homes, retirement savings, family relationships, friendships and more recently I lost custody of my children aged 7 and 10.

    I’m a trained professional social worker with a good medical team and my allergic asthma is so difficult to treat I have to stay home in a strictly controlled environment to prevent relapses.

    I’m on a waitlist to try a new treatment with a very expensive eosinophilic asthma medication called Mepolizumab. I’m very hopeful I get approved for funding so I can try this medication. If I do get to take it I pray that it works and allows me the chance to say goodbye to my bubble – make friends, finish school and get back to work. I have a lot of work and catching up to do.

    Living isolated in a bubble is incredibly hard. Living in a bubble and having others call you names and criticize (or abandon) you for being a burden or being accused of being a malingering useless bum is soul shattering.

    I believe people are generally good and understand everyone has a breaking point, but my experience begs the question, are people only as valuable as their economic worth?

    If the answer is no, what are we doing to provide rehabilitative aid and promote Societal inclusion?

    If the answer is yes, what is the humane way to help burdensome citizens die?

  • iam2nd
    2 weeks ago

    Thank you for the article. I can identify with all of them at some point in my journey, but am now in the “let’s work together or I will roar” category. I have had a PCP get angry and want to argue with me because I knew about a recently approved drug before she did (I was using all the components separately). I have had Drs tell me I can not have both asthma and COPD/emphysema and want to treat me for one or the other. I’ve been hospitalized 3x for respiratory failure. Navigating the muddy waters of healthcare where I live requires vigilance and being my own best advocate, for sure. Thanks again.

  • robbym
    2 weeks ago

    What happens if you roar and nobody cares?

  • Leon Lebowitz, RRT moderator
    2 weeks ago

    Hi again, robbym – I would say this is a lot like ‘when a tree falls in the forest….’ puzzle!
    All the best, Leon (site moderator)

  • John Bottrell, RRT moderator
    3 weeks ago

    Love this article! I would say I’m with you in the “I am empowered!” phase.

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