Remembering I’m the Boss for My Health Care Professional Team

By Stacie Prada

When I think of all the health care professionals I’ve seen in the last thirty years, it overwhelms me.  When I look at how I interact with them and how it’s changed with time, I think changes in my confidence level and perspective have contributed to much better interactions and level of care.

Thinking of the number of health care providers I’ve seen since reaching adulthood overwhelms me.  It seems so excessive and high maintenance. The standard list of providers for a healthy adult can be a lot of people.  The annual or semiannual appointments can get overwhelming for just my primary doctor, dentist, dermatologist, and gynecologist.  Add aging, and ophthalmologist was added.  Add injuries and trauma to my health care needs, and my team expanded to include counselor, podiatrist, physical therapist, orthodontist, and oral surgeon.  Once I was diagnosed with multiple sclerosis and had symptoms to address, I started seeing a neurologist, a urologist, and a naturopath while seeing new physical therapists and counselors.

What blows me away is that my list is for a person with a chronic illness who is relatively healthy!  I can imagine the team of people needed to support a person with severe health issues is exponentially larger.

I like to think of all of these professionals as consultants for the business of my health.  I’m hiring them to help me be in the best health possible.  I want them to assess what I tell them and guide me.  They’re the ones with education and expertise in how bodies typically work and can relay how it applies to me.  For them to do that, I try to inform them as fully and accurately as I can. It can feel like confessional, but getting over the discomfort of talking about embarrassing symptoms is the only way I’ll get what I need from our interactions.  They are on my health care team, and I’m the boss.  Given I manage people as much as possible as a team, it’s a very egalitarian conversation.  That said, if there’s disagreement, I make the call.  I’m the one who will need to put the effort in, and I’m the one who will live with the consequences.

At this point in my life, my neurologist is the provider that I see regularly – once or twice a year – while I may let my annual checkup with my primary doctor slide a year.  The rest are as needed and may periodically involve a series of appointments or just a one-off.  I’ve noticed that when I take care of things without consulting my neurologist, he thinks I’m doing fine and have I no problems.  I’m learning that I should check in with him more often.

The MS Clinic I go to provides an online portal where I can email my neurologist. In the past they always told me to call and they would always call back, but the process wasn’t efficient.  I’d leave a message, the nurse would call back when she could which usually required me to drop work to chat, and we’d talk while she took notes. Then my neurologist would call back after hours when he could.

Now with the portal, I can email my neurologist questions at my convenience, and he can get back to me when he can.  There’s less of a hurdle for me to check in with him, and I think I would benefit greatly by interacting with him more frequently during the year.

As I’ve monitored my own health and become more confident in my ability to notice changes in my body, the conversations I have with health care professionals are just that: conversations. We both talk, we both listen, my concerns are received as valid, and decisions are discussed not directed.

As some of my providers have gotten older and are retiring, I’ll need to find replacements.  It can be tempting to stick with someone who I don’t really like because it’s easier than shopping around.  If that happens, I want to tell myself that it’s worth the effort to find the right person to treat me that I can work with. I want to tackle any self-doubt that may creep in by reminding myself that I know my body and any concerns I have are valid.  I’m the expert on my body. While my assessment can be challenged and I can be proven wrong, it’s not okay for it to be discounted or dismissed.  Any health care professional will need to factor that in for me to keep seeing them.

If I can find providers who know their stuff and are open to learning, and if I can stay confident and remember I’m the ultimate decision-maker, I’m positive I’ll have the best care and prognosis possible.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Susan Nellis says:

    I have had ms since 1999 or so and I am out of work on disability. My question is regarding health insurance for my medication Copaxone, that I do 3 times a week. I cannot afford to pay these big bills of $1000.00 a month!!! I worked for 20 years and I have an IRA that seems to be a problem rather a blessing 🙁 I worked for that and now I have to use it to get my medicine?! Is there any health insurance out there that can help me?! I am not 65, I am 57 and I do have Medicare and AARP which don’t seem to be helping me much. :'( Any help you can give me would be much appreciated!! Not sure what to do anymore. I am in a state of constant confusion!! (and tons of paperwork!!) :/
    Thank You, Susan M.Nellis
    Please Help me!!

    • Angel Blair says:

      Hi Susan, thank you for reaching out to the MSAA. Your questions and concerns when it comes to health insurance and medication coverage are extremely valid and ones that many MS clients find themselves facing at times. MSAA’s Client Services staff will be contacting you directly to address your questions, and please feel free to can contact the MSAA Helpline directly at phone (800) 532-7667, ext. 154 or email: MSQuestions@mymsaa.org for further inquiries. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

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