Support is excellent until it isn’t. I can have my shirt on fire, and if someone asks if I want help, I will still say no. I’m trying to learn the balance between accepting help and not feeling like a burden. Other times, people ask what they can do to help, and honestly, I can’t even tell them because I am barely surviving.
What is ATTR-CM?
Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare progressive disease of the heart muscle that leads to congestive heart failure. It occurs when the transthyretin protein produced by the liver is unstable. Symptoms include fatigue; shortness of breath; irregular heart rate or palpitations; swelling of the legs, ankles and stomach; brain fog; wheezing; and dizziness. It often goes underdiagnosed because of a lack of awareness and knowledge of the disease. There is currently no cure for ATTR-CM.
Transthyretin amyloid cardiomyopathy (ATTR-CM) robs you of your abilities. The shirt I could once button now takes longer to fasten. Walking, which used to be easy, now leads to stumbling. Dining out, once an enjoyable experience, has become a source of anxiety as I wonder how my stomach will react to dishes I’ve eaten for years. It’s all a balancing act, and I feel like the scales are constantly tipping, often not in my favor.
Read more about ATTR-CM treatment and care
We recently joined a church and met some fantastic people. I had the opportunity to share my testimony about this disease and how present God has been in my journey, despite how challenging it can be.
Not one person had heard of ATTR-CM before, and it felt wonderful to be able to share my experiences and tell them all about it. Every time I share my experiences — whether through speaking, writing or journaling — I feel like I am continuing what my dad started and somehow reclaiming control over a disease that seems uncontrollable.
Some friends we met at church gave us the shirts we’re wearing in the photo and made support shirts for themselves. When we joined, we all wore the shirts together. It’s a wonderful gesture, but it also leads to many “What-ifs?” regarding this disease. Once again, I find myself at the scales of life and ATTR-CM. My dad’s journey flashes in my mind, and I wonder how this will affect all of them.
My oldest child is struggling with the disease as well. I’ve mentioned before that he sees so much more than the world does. I want to be a mom who can do everything and find myself falling short most days anymore. Accommodations have to be made, and everything else changes.
My husband takes on more responsibilities because I cannot, and while they say that’s what family is for — and it is true — I still wrestle with this feeling. I struggle with accepting extra help, thinking I’m not enough. My self-worth is based on what I can and cannot do.
Am I a good enough friend? Do I talk about my experiences and this disease too much? Do they need to do more for me than I do for them? How can I protect them? When I feel like I am dying inside, I say I am fine so they are OK. Once again, I find myself measuring my worth against what I can achieve, and it always seems like ATTR-CM looms at the top.
These are the conversations no one has; they are the things the medical field doesn’t warn you about. I’ve been told about the course of the disease, but no one prepares you for how you will feel when you start losing the abilities you once took for granted. I have already surpassed my dad’s experiences, and while it is a good thing because there is treatment available to slow it down that he did not have, some days leave me wondering when the other shoe will drop.
So what do you do? How can we navigate all this? We need support! I cannot imagine walking this journey alone; even though everything inside me wants to protect my family and friends, they help me more than they will ever know. My faith in God holds me up when I cannot stand. Some days, I literally cannot stand! I have learned to feel the emotions that come with this disease and then release them. I can say that life is different now; I cherish it more than before, and I am more aware of memories and small moments.
Get a support system that boldly shows it. These shirts mean everything because as we wear them out, people can ask about them, allowing us to spread awareness of this disease and educate others. Education leads to more research; more research means better treatment, and one day, a cure! Early detection is key, but for that to happen, we need doctors looking for this disease.
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