Getting People to Understand Rare Diseases and How We Can Do Our Best to Be Better

There is not much doubt that there is a connection between childhood trauma and chronic illnesses. I recently read that people with an ACE score (adverse childhood events. It’s a 10 question basic survey that asks about a variety of traumatic experiences during childhood) of 5 or higher have a statistically much greater likelihood of dying at least 20 years earlier than the average person who hasn’t experienced those events. I took the quiz. I had an 8. It was finally something I felt grateful to not have a “perfect” score of.

So does having a high ACE score mean that your chronic illness(es) are your fault? I’m going to give a resounding NO!!

I’ve been in a place of feeling a bit crazy about whatever is going on with my body. I test positive for some and negative for lots of diseases. Some of my health issues have become clear. Some of it is still mysterious. I keep getting referred to specialist after specialist lately to figure out the last of my most troubling symptoms. They refer me to bigger medical centers. I go back to my go to of my biological family telling me “you’re just being dramatic”. What I realized today is that none of the specialists are calling me “crazy”, they have just been validating that I have something complex and systemic and beyond my smaller city’s scope of expertise. I’m kind of done with specialists as I avoided them for a long time except a two week heart rate monitor I wore indicated an issue with my heart. (Duh? My heart is broken over missing my son. I’m all seriousness, I don’t know but will be getting to the cardiologist soon.)

We live in a world of social media where everyone lives a perfect life with perfect houses and perfect children and just perfect, perfect, perfect. It’s been upsetting me as even though I personally know a lot of it to be utter hypocrisy on behalf of those posting as I know what is really going on in their lives, it has left me feeling like I’m the only one suffering. I work to be authentic on social media, but I fall short on it too.

In the past couple weeks of seeing this new counselor, I am prioritizing how I’m spending my time so I feel I’m living a fulfilling life instead of depressing myself with social media or other tasks that are completely useless to making me feel good about myself. I’ve been wasting time on soul shrinking activities versus soul growth.

I’m still grieving hugely over the loss of my son, which I hope someday I can tell my side of the story as it’s very compelling. I’ve also been grieving over my losing function and abilities rather rapidly since July without a real answer why except that it’s kind of the nature of neurological disease.

So back to the ACE score and how dire it sounds. There are many things you can do to mitigate having a traumatic childhood impact your health seriously. Good trauma therapy is a start. Other things were suggested like healthy diet, maintaining a healthy weight, yoga, exercise, meditation, and forming healthy friendships and relationships.

I truly am working to evict the idea that my illnesses are my fault as I do all of the above and more to be well. Sometimes it gets frustrating to take such good care of yourself for nearly 2 years and still get worse physically. I do know that I continue to get stronger emotionally. I may have intense moments of sobbing and grief over missing my son, but that IS emotional health. If I numbed it out and pretended it wasn’t happening that would lead to a ton of anxiety and depression.

I’ve been working to cultivate community locally, not online. I’ve had to do a lot of my goodbyes to social media, which has been mixed. My instinct is to grab my phone and scroll through my list of “friends” so I can connect is still strong. I realize it’s a better expenditure of my time to leave that alone to pick up the phone to make a plan with someone locally or read a book or enjoy our unusually beautiful weather we are having.

I know for people younger than me (I’m 43) in person connection can feel foreign, especially if you are also managing social anxiety. I will tell you that a real hug is way better than someone sending the gif that says “hug loading”. I get it’s a nice sentiment, but it personally makes me feel awful.

So it might be too late to not cut my 20 years of my life short that my ACE score is a good indicator that I’m at risk of, despite my best efforts. So I hope for people of any type of trauma background that you learn about ACE and how it can change your life if you don’t be proactive to change it.

The above picture is a few days before I had my long overdue IVIG treatment. The one on the right is after recovering from a couple days from it. I would say that treatment may not cure me, but it can at least give me the energy to smile again and remember why even hard lives are worth living.

My final note about rare illnesses is that it’s really important for people to see you and how bad off you are on the worst days. I can’t really fault friends who don’t believe how sick I get if they never see it. I wish my primary care could see me on my worst days, but I can’t drive those days. I know she reads this occasionally. Perhaps she will see the marked difference in how much better I look after getting treatment.

Regardless, I just want people to know if you have a childhood of severe trauma, take your life back by taking care of you beginning now. Don’t become another ACE statistic and die 20 years too soon. There’s a lot of wonder in this world that I hope all my incredible self care will someday come to fruition and feel well enough to have a bigger bucket list than “maintaining clean underwear”. (That’s supposed to be more for a laugh than sound tragic).

Take care of yourselves. You certainly deserve it even if no one ever told you that you did.



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