Advocate for Yourself to Overcome Pulmonary Fibrosis’ Boundaries

Advocate for Yourself to Overcome Pulmonary Fibrosis’ Boundaries

If you’re like me, you may have different reactions to the phrase “advocate for yourself.”  I get it.

Your experience, upbringing and background may embrace this message wholeheartedly, or you may shrink back from it either because you were taught not to advocate for yourself, or you simply don’t know how. That makes sense.

The simple truth is that advocating for ourselves is essential as we live our lives and seek treatment for pulmonary fibrosis (PF).

Let me clarify. To me, advocating for yourself means being in tune with and caring for yourself, standing up for yourself, fighting for yourself, or having someone fight for you when needed.

We are walking a path few walk. We need essentials like oxygen and specialized types of medications and treatments few know about.

Some of us have medical professions who are in tune with us, and educate us well about what is happening to our lungs and health, and advocate for us to get what we need.

All too frequently, we also have medical professionals who do not educate us, or advocate for what we need.

They may be constrained by what is available in their geographical area, limited by what their higher-ups and insurance will approve, or be overwhelmed by the number of patients for whom they are providing care.

I’ve had both experiences.

Two years ago, my husband and I sat in a pulmonologist’s office where he told us I had a few months to a year to live. He said I had rapidly declining PF, and recommended palliative care (“We can’t do anything for you – let’s make you comfortable”). We were shocked, stunned and weren’t thinking clearly. This was the first I heard I had a terminal illness.

Did I pop up and advocate for myself? No, I did not. I couldn’t, I was confused, discombobulated, grieving and processing.

It wasn’t until a month later when I shared the news with my co-workers, that a friend recommended I pay for a second opinion outside of my insurance company (who employed my doctor). She recommended someone who had done wonders for a friend of hers.

I’ll write more about that in another post, but the short version of the story is that my new pulmonologist said I was declining rapidly because I was on the wrong medication. He had me switch to another med that kept me stable for 12 months. He also referred me to the University of California, San Francisco for additional consultation.

My first doctor wanted to refer me outside of his employer/insurance company, but his boss wouldn’t allow it.

They were just waiting for me to die.

Needless to say, I dropped them a few months later and have a different insurance company and doctors. The great news is it’s been two years since then, and although I have worsened a bit over the past year, I’m still here and feeling better on a different medication and higher oxygen levels.

My friend advocated for me by suggesting a referral to someone she trusted, and my new pulmonologist advocated for me when I couldn’t.

Advocating for yourself doesn’t mean being argumentative or being a bully.

It doesn’t mean not caring about those who aren’t fighting for you. It does means coming alongside yourself as a caring and protective friend. Why? Because God made you a precious and valuable person, one worthy of love, care, and protection.

You may not have grown up being given positive messages like this. You may not have had others in your life see your needs and step in to protect you or guide you. I’m sorry if this is your story. If so, it makes it harder as an adult with a terminal illness to instinctually know what to do to advocate for yourself. It makes it harder to believe you are worth fighting for. You are.

It’s not too late! You can learn how and I’m here to help.

I’ve had to advocate for myself a lot in the past two years. I’ve fought for tests, specialists, medication, oxygen, appointments and equipment. I’ve filed claims against a major health provider with the state of California.

I also gave up, not taking the next step against said insurance company because I was worn out.

I didn’t have the strength at that time. I just couldn’t do it. There’s no shame in that. We can do only what we can.

Right now I’m in a place where I can advocate for myself. I just had a victory after a five-month battle to get liquid oxygen delivered to my home (I’ll tell you more about that another time). The reality is that the time is coming when I won’t have the strength to advocate for myself. I’ll need someone to help me do that.

I’m a bulldog when I need to be, and don’t give up when there is injustice. My hope is to share some tips with all of you to help you advocate for yourself. I also would love to have you share with all of us what has worked for you. We all can support and learn from one another.

You are worth it. You matter. The life you still have to live matters. Every breath matters, and your quality of life matters.

I really hope this encouragement to advocate for yourself helps. I don’t know exactly what you are dealing with, but I know it is a lot.

What I do know is that you are worth the fight. You are worth advocating for. If you aren’t able to fight for yourself, you will need to get some help from others.

I would love to get your input.

What stood out to you? How have you been able to advocate for yourself? When is it the hardest? What do you need to advocate for yourself?

Please leave your comments below and share on social media or via e-mail with others who might benefit.

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.

6 comments

  1. J. Turbes-Shaw says:

    Ms. Fredrickson’s counsel to advocate for one’s self is spot on…but in this litigious society where we blanch at mentioning names, I think those who are terminally ill have little more to lose when they step up and tell which insurors, doctors and others have hindered or knuckled under to financial or organizational expedience rather than give the care they could or should give. When your diminished energies are being expended with daily nose-to-nose confrontation with the very people who by law and oath are sworn to “do no harm”, it should be stated openly with whom and why you are not being given the care you are due.

    As a caregiver and “advocate” for my IPF patient, I have had a steady uphill battle with Kaiser of Colorado in trying receive approved medication and commonly and universally acknowledged pulmonary rehab. We have never simply been offered these as prescribed treatment; rather, we have had to find out for ourselves through such sources as Pulmonary Fibrosis News and other outlets that both med’s. and rehab. were standard practice for PF/IPF.

    Until such obstructionist practices on the part of the for-profit health care industry are met with specific experiences and names by patients for other patients, these unethical “business as usual” types of mediocre care will only go on. Advocacy for one’s self is essential, but it has to be combined with openly stating verifiable cases of mediocre care. The bottom line is, your time is limited; the industry’s is not.

    • Tim Bossie says:

      Thank you for your very encouraging and well said comment. It is right that patients desperately need to be their own advocate – especially those with illnesses like IPF. It is disheartening to see that many do not get the information or help they need when battling this disease. For that’s what it is… a daily battle – emotionally and physically. We hope that you can continue to be an advocate for the person you are taking care of… but also for many others whose voice is not as strong.

    • J. Turbes-Shaw, Thanks so much for you comment. I share your frustration about the injustice that patients and caregivers sometimes go through to get appropriate care. As a new patient columnist I am finding my way as to how specific I can be, especially since it could affect pulmonaryfibrosisnews, for whom I am so grateful to write a column for. Thanks for being an example of a loving and strong advocate for your loved one. I’m hoping we can continue to learn, grow and encourage one another on this very rocky path.

  2. Michelle Kelly says:

    The greatest problem is that people with IPF, especially the elderly, do not have the energy to advocate for themselves, that is why a primary caregiver (a daughter in my Mum’s case) must be heard and advocate at all cost. In New Zealand, so few people know about this dreadful IPF disease, and fewer seem to care. We cant even get Perfenidone yet – I have had to import Perfinex from India (Cipla). Keep up the good work. My dear Mum died on 1 October this year after 11 years – this last year was the worst. Her energy levels were terrible and we had to do everything for Mum in the end. You are inspiring others to fight the good fight.

    • Hi Michelle,
      Thanks so much for your comment as a caregiver who has fought this fight for your Mum all the way to the end. What an inspiration you are! I’m so sorry that knowledge of, and care for IPF is farther behind than where I am in California. I love your fighting spirit to have the medication for your Mum flown in from India. My heartfelt condolences for the loss of your Mum after so many years. October first is just a few weeks ago! Sending a big hug to you in New Zealand. My husband and I took a trip there in 2009 on a “Lord of the Rings” Tour. It was the most wonderful trip of our lives, and I’m so grateful we were able to go before I got breast cancer and then PF. Thanks so much for your encouraging words.

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