Limitations, such as poor balance and weakness, have made me self-conscious at work. I love working with young children, but they can be very curious and honest. I wear ankle and foot orthotics that are noticeable. The kids I coach frequently ask, “What are those things?” or “What happened to your legs?” I give them a simple, honest answer and then move on.

I get asked questions by parents as well. One being, “Are you okay?” That question is usually asked when I appear to be struggling to balance, or I am walking particularly slowly. One of the hardest things for me emotionally is when I see returning clients that remember me from just a couple of years ago or less, and they ask, “What happened?” I translate that as, “What happened to you?” Or, “You don’t look or walk as you used to.” 

I give them a brief explanation of my diagnosis. It really stings when the reality of my symptoms caused by living with hereditary transthyretin amyloidosis (hATTR) become outwardly noticeable. 

Another hurtful statement is, “You used to be so strong and fit.” This is just a painful reminder that this illness has taken over my body, changing me into a completely different person I never thought I would be; inactive, lazy, and frail. 

Read about experimental therapies for hATTR

Since my symptoms caused by hATTR have become apparent, I have found it difficult to engage in social settings. My chronic fatigue makes it hard for me to exert the energy to get out of the house aside from work. I barely have enough energy to do the laundry on the weekends. My incontinence issues can frequently interrupt a visit with a friend, which sometimes makes me feel self-conscious. 

Oftentimes, I simply do not feel well and tend to avoid social situations. I remember about a year ago, I was at a friend’s 40th birthday party. She went all out with a venue, music, lots of friends, and great food. It was an amazing turnout. There was dancing, drinking, and an overall fun event. 

This was before my diagnosis. I had bilateral drop foot, but no orthotics. I was not on any medication, and at this time, my symptoms were at their worst. I showed up to the party, barely able to walk, let alone dance. The food looked amazing, but I could barely eat. I so badly wanted to feel and be normal.

I remember thinking to myself “Why is this happening to me?” I just wanted to enjoy the party and enjoy my friend’s special day.  I have had to learn to adjust to the new normal and go about each day as if everything is just fine.