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Heather McKinstry: “Just because you don’t look sick, doesn’t mean you’re not”

Just because you don’t look sick, doesn’t mean you’re not. I frequently heard that I didn’t look sick or that I looked healthy. People with chronic symptoms often learn how to hide how they are truly feeling. As a part of our “Unstoppable” series, I had the pleasure of interviewing Heather McKinstry. Heather is a Financial […]

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Just because you don’t look sick, doesn’t mean you’re not. I frequently heard that I didn’t look sick or that I looked healthy. People with chronic symptoms often learn how to hide how they are truly feeling.


As a part of our “Unstoppable” series, I had the pleasure of interviewing Heather McKinstry. Heather is a Financial Advisor at First Command Financial Services, Inc. Heather helps helping military members plan for their financial goals.


Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

I grew up on a farm in a small town is upstate NY and have 3 sisters and 4 brothers. We worked hard and were mostly self-sufficient. I loved getting good grades at school and would have been considered a shy bookworm. I got a degree in Community Health and planned to work in the non-profit field helping people, specifically at-risk youth. It was hard to work due to my poor health. I ended up moving to VA, got a liver transplant, met my husband, and now have a great job helping military members plan for their financial goals.

Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?

I was diagnosed at 16 with a hereditary blood disease, Acute Intermittent Porphyria. I was hospitalized for weeks while they tried to figure out my diagnosis. Once diagnosed it took several years to figure out a treatment plan that worked. I ended up needing weekly infusions to prevent hospitalized attacks. My health and quality of life slowly continued to decline, and I ended up receiving a liver transplant.

It was extremely difficult to not become depressed and feel hopeless, and sometimes I did feel that way. The biggest thought that always pushed me to do better was that someone was suffering more than I was or fighting a battle that was harder than mine. If I could change how AHP was treated or the knowledge available, then I had to keep pushing myself. I didn’t want the person after me to go through everything I went through, I wanted it to be better for them.

Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?

I graduated from high school with honors, got my Bachelor of Science degree, travelled to many states and even overseas a few times, and I met and married my husband. I also helped change health insurance laws that prevented liver transplants from being covered as a treatment option for AHP. I’m also incredibly proud of the work I’m able to do with Alnylam Pharmaceuticals through their Patient Ambassador Program.

What advice would you give to other people who have disabilities or limitations?

Don’t lose hope! Educate your healthcare providers and be an advocate for yourself. Communication is huge, be open and honest with your caregivers, family, friends, spouse, doctors, nurses, everyone. And don’t be too hard on yourself, give yourself grace!

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

My husband, Mike. He has supported me through the worst and best times. He was the best caregiver, friend, listener, problem solver, shoulder to cry on, thinker and speaker when I couldn’t do either, and quiet, patient, and/or supportive advocate.

How have you used your success to bring goodness to the world?

I’m constantly sharing my story and experiences with others. I’m involved in the Patient Ambassador Program with Alnylam Pharmaceuticals, and now I help people plan for their financial security.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

  1. Just because you don’t look sick, doesn’t mean you’re not. I frequently heard that I didn’t look sick or that I looked healthy. People with chronic symptoms often learn how to hide how they are truly feeling.
  2. Friendships or romantic relationships are hard. Being sick means that we aren’t always able to do what everyone else is doing. I couldn’t drink, take spontaneous trips, etc. Get to know the real person before you decide if you want them in your life or not
  3. When I say, “I’m fine”, I’m usually not, but I’m trying to be. Sometimes it’s easier to put on a brave face then disappointing a loved one.
  4. Think twice before you take anything said or done personally. We all deal with pain differently and sometimes it causes us to say or do things we don’t mean.
  5. Help the caregiver. Usually everyone is focused on the patient, but the caregiver also needs help. They need support, rest, and time away from being a caregiver.

Can you please give us your favorite “Life Lesson Quote”?

Someone always has it harder than me so I can get through this.

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

There’s always so much pressure with this question. I’d probably want to talk to someone that has had a significant impact on the AHP Community, there has been so many in the last few years!

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