Self-Education is the Basis of Better Health Outcomes, Physically, Mentally, and Financially

Self-Education is The Basis of Better Health Outcomes, Physically, Mentally, and Financially

We've all heard the phrase, hindsight is 2020.

Yes, it can be if we know to look and be retrospective and heed the lessons learned.

However, too many of us don't take the time to take advantage of hindsight and find ourselves caught over and over in the same tidal pool.

When my husband was diagnosed in 2002 with MGUS, the driving force for me to use as a guide to be proactive in his health as his advocate was the illness and subsequent death of my five-year-old brother David, who was very rarely spoken of in my family.

I always wondered why it was sort of secretive.

I remember finding his death certificate in his chest and wondered about him for years until as a teen I asked my mother about him and his illness.

You see, I was only one year old when he died.

I have no memory of him at all.

What I know was told to me by my mother.

Many years after his death.

He had leukemia diagnosed when he was four.

At that time it was a death sentence.

He was in treatment, but it was all experimental at the time.

I asked my mother what kind of leukemia he had.

She wasn't sure.

She knew she had given him over 50 pills a day.

I ask what they were, but she didn't know.

I couldn't believe how little she knew about his illness or what was being done to him.

I always felt that when hearing her tell me about David that she was guarding herself somehow. He was eventually sent home to die.

Hearing the bits and pieces always struck a weird chord with me.

It was only as an adult accompanying my husband on his cancer journey with myeloma that I began to understand the horrible cost to David and subsequently my parents and older siblings.

I was always trying to investigate his illness from afar.

So now the seeds of question that always remained with me and the illness and death of my husband has led me to where I am now.

Those two experiences, especially the journey with my husband, made me acutely aware on a daily basis of the urgent need for all patients to be educated in their illness so they can openly and actively participate in their treatment not only for cancer, but for their overall health, mentally, physically and financially.

Overcoming barriers of bias.

Both conscious and unconscious are still huge barriers that many patients facing.

Educating oneself seems to be a huge equalizer.

Knowledge gives you the confidence to question, make better decisions and to benefit from those decisions.

It gets you relative peace of mind that the decisions you are making are in the best interests of you and your family.

You may be asking how all of this comes together when in treatment for myeloma, AML, or quite honestly, any illness.

Simply, the more you know about your treatment, the better equipped you are to ask the right questions about the cost of treatment, its side effects.

If you are going to have to take time off from work, if there are other anticipated upcoming treatments that you are that you need to prepare for.

If you're currently working, you will need to know about your rights under the Americans with disabilities Act, as well as your access to state or federal FMLA.

Maybe you need help with caregiver resources.

Also, if your treatment is available in town or if you need to find treatment elsewhere, you will need to know what your insurance is going to cover.

And if you have other options available to you, you can ask if there are other treatments available with perhaps less associated costs.

You can prepare your personal finances, perhaps by creating and making changes to your household budget.

Knowing your full treatment plan can help you gather the financial assistance you would need to help you get and stay on treatment.

There are many resources that you can easily access to educate you on your illness as well as give you information about financial resources for which you may qualify.

They include help with travel for medical treatment, copay assistance, deductible at premium help utilities, lodging and urgent financial help.

Many of the resources available today were not around to help my husband or I had no knowledge they even existed.

No one to inform us during his cancer journey.

And it's certainly not available to my parents with a cancer journey with my young brother in the early sixties.

Education can even the playing field for many patients.

Becoming knowledgeable about available resources can help you control your stress levels, which can benefit your overall health outcomes.

And knowing there are financial resources available to you can help alleviate some of that financial stress that comes with having a very expensive illness.

In one of the few conversations I had with my mother, I ask how they found out about my brother's cancer.

She said, they were told over the phone.

The doctor said, Your son has cancer and is dying.

I can't imagine living that experience.

My mother said she felt hurt and angry for it being so impersonal.

She said this was a hurt for which she never forgave herself.

This was the time in 1961 when the disparity in health care was even more glaring than it is today.

My parents didn't know how or were even encouraged to ask questions to participate in David's care.

David and our family suffered as a result.

I encourage everyone to take advantage of the learning opportunities available.

Doing so will provide you with a peace of mind that you are getting the best care while managing the cost of your treatment and reducing overall stress to allow you to live your best life.