Chronic Disease and Patient Education: “Be True To Your Disease”?

Chronic Illness Caregiver Support, Raleigh-Durham N.C.“Be true to your disease”

As soon as I heard it nothing else mattered. I turned off the radio interview because one phrase begged for my full attention. I wrote it down. The interview topic was chronic disease and the snippet that was holding me hostage was “…true to your disease.”

What was true to your disease? How does one become true to a disease?

The doctor might be true to a disease by treating it, I postulated.  I imagined that the pharmaceutical industry might have a different end game. And then there’s health insurance… What about media, specifically television commercials? All these industries produce their influence, by oath or orientation.  (A common and prevailing theme might be money). But what of the person with a disease?

Someone with a chronic disease has a lot coming at them: education, emotion, navigation, assimilation. True to your disease…? Still a “Whaaa..?” moment for me, I must admit.

I get so angry at the television commercials. On one hand I’m glad to see them — they acknowledge the fact that the chronic condition exists, and in numbers. In a way they are helping to normalize it. Millions more people will now know that there is such a condition as (insert name of condition here).

What appalls me is that in the commercial there is almost always a drug for it, and we are instructed to “Ask your doctor about (name of drug).” Listen for that phrase when you next view a drug commercial. It’s almost always there. It can be creepy.

So rather than Problem > Education > Remedy we may receive only Problem > Drug.

I sat down with a friend recently who spoke of her Multiple Sclerosis diagnosis and how she manages it, physically and emotionally. It was evident to me that she had come to find what I call her true self. Despite the noise and daily news alerts crying “New Link Associated with MS! New Treatment! New Study!” she has found what works for her. It turns out that her sanity is maintained with very simple and realistic approaches.

I’d like to share some of her wisdom:

Take your time and learn about your diagnosis. “Finding out that I even had a diagnosis put things in place for me. It explained the changes I was beginning to see in myself: difficulty in processing information, and my body would often become tired.” She remembers the best advice she was offered was from the Dean of her college. Upon her diagnosis, he simply advised “Go to the MS Society website  and learn everything you can.”

What she discovered was that, along with education about the disease, she had more to learn about herself.

Because her family members had also encountered MS she’d assumed she knew all there was to know. “I thought I knew it all, because I had a family history. I thought I was savvy. She then queried me. “Did you know that for every person in your family that has MS there is a 10% greater risk that you will have MS?” She had been aware, and despite her brother and sister’s diagnoses that fact simply did not or would not register not on her radar. “Like a teenager who thinks they know it all,” she said, when in truth and retrospect they do not.

Look at life as a challenge. Know that MS is not fatal, and really know that. “There will be things that limit you – times of lessened activity, depression, driving – controlling body movement,” things often seen by others as downright inability. Not so. We were in agreement as we noted that when folks are new in diagnosis they will often find themselves working through the five stages of grief (denial, anger, bargaining, depression and acceptance, Kübler-Ross). She has found the saying “That which doesn’t kill you only makes you stronger” certainly rings true for her.

Be open to new ideas. Involve others. “Being open to new ideas has been key.  It was only by talking with others that I found a great new doctor. I found things that worked, for me”.

Don’t be afraid to say: I want another doctor.” “Don’t be too obliging with a doctor. Ask questions.” She asked her primary care physician for a referral to a different neurological group for a second opinion. Through that action she found the neurologist she trusts now with her care.

Don’t compare yourself to others. Everyone is different, and really know that. “MS does not know any age.” Recently she met two people who were newly diagnosed. One was in her 50s and another in his 80s.

There may be things that affect you that you didn’t factor in. She told me a story of embarking on a hike while with a tour group. Finding herself affected by heat and requiring assistance to complete the walk, she was grateful for the help in the moment. Later she saw her challenge as one of being prepared and open to the fact that things may not always go as planned despite setting realistic expectations. That experience serves as an example of coming to know oneself.

Learn how to sift and filter that information. Arm yourself with education, and learn how to sift and filter that information so that it makes sense to you.

Focus on what you’d like to do that day. Set realistic expectations (for you). Discard as you wish. Doing so within manageable chunks of time is — well, more manageable.

Lots of folks say “I know somebody that has MS.” We agreed that at least the media is acknowledging her disease more so than National Week or National Month time periods. I cited my contempt for the current television commercial sponsored by a pharmaceutical company in which the person with MS is shown as hiking and swimming and diving and attending a county fair, seemingly all in one day (and all within 30 seconds or airtime). There was no definition nor description and no education about MS. The commercial did however contain the all-too-familiar refrain of “Ask your doctor about….” At least introducing MS as a topic does serve to normalize it to some degree, however this Advocate felt compelled to point out what the commercial failed to mention, the error of omission.

It may be common to experience feelings of vulnerability. A great deal of her time is spent “second guessing” and evaluating. She describes herself as “always aware,” and that can be emotionally taxing. Common ground was found with the declaration that “The committee in your head is always in session!” She is continually running contingencies. But that is seen as taking care of oneself, and that is good.

Don’t be afraid to ask somebody with MS questions. She believes most folks with MS would like to talk about their MS and raise awareness. The parts that nobody wants to talk about may be the physical manifestations and any progression. She is comfortable (while knowing others may not be) talking about what changes have come, and may come, in her legs, her arms, her voice.

My friend has found a way to stay true to her disease, a way that works for her. Talking with her surely bolstered my advocacy. We must be mindful of the journey and the influences. We must keep HAVING THE CONVERSATION with clients and families and with all the influencers in hopes of helping someone to become true to their disease.

NAVIGATE NC  helps families navigate the challenges that come with aging and chronic disease. CONNECT WITH US  on our website or by calling (919) 628.4428 to schedule a free initial consultation.

Additional References: Worldwide collaboration toward research, clinical care and outreach  “Patients Helping Patients” is their tagline  (or find your state or local chapter)

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