A Letter to My Disease: A 25-Year-Old Patient Confesses Real Thoughts on Her Rare Condition

February 18, 2016

Rare disease patient, 25-year-old Lindsey, has a genetic disorder called Familial Chylomicronemia Syndrome (FCS). FCS occurs in about 1 in 1 million people and the disorder causes the body to not be able to break down certain fats correctly. This disease frequently leads to symptoms such as pancreatitis and fatty deposits in the skin.

To help cope with her disease, Lindsey has written a letter to FCS outlining her daily struggles with having a rare disease and her hope for the future. The letter is a first person perspective of life with a rare disease, how it has impacted her daily living, the frequency of her hospitalization and her interactions with others.

Dear LPLD (FCS),

We sure have been through a lot together and after 25 years, I am still trying to figure you out. You make my life so hard almost every single day. I cannot go an hour without stressing, that because of you, I am going to get pancreatitis. I worry every single day about the symptoms you may bring and also how we are going to work together in the future. I want to have children and not have to spend my entire pregnancy in the hospital and I definitely do not want my children to endure what I have had to.

Can you ever give me a break?! I think at this point, I deserve that. I know that I am nowhere near perfect when it comes to eating and I am the first to admit when I over do it. You tolerate those times when those brownies look too great to pass up (by tolerate, I mean, you don’t send me to the hospital), but really, I only have a bite and the next day you still make me pay for it. In fact, I pay for it for multiple days, sometimes more than a week.

The worst part is I have grown so accustomed to feeling so crummy every day that I have forgotten that it isn’t normal. At this age, I should feel so fantastic. You sure have helped me become a great actress because I will fake how I feel every day. I even have my family and closest friends fooled. Faking feeling well is mentally draining and I hate you for being the root of my health problems. You have truly succeeded in exhausting me.

What I really don’t understand is even when I eat perfectly (under 10 grams of fat, low carbohydrates, high protein, low sugar) how you are still unhappy.   I could eat salad and water and you’d find a way to cause that awful and all too familiar rib cage and scapula pain. I can’t take pain meds 24/7! I have things to do: work, spend time with friends/family…you know, have a normal life. I know you love to make me cancel plans and rest all day but life doesn’t work that way. Please show me some mercy. I am thankful I am not hospitalized as often but I just want to wake up and feel amazing. Please let me feel that way!

I don’t think you’re aware of how scared of you I am. You scare me more than anything because you hold my health in your hands. I have been hospitalized more than 30 times, one bout landing me in the ICU. I know that I have caused a couple of attacks with poor choices but the rest is all you. I know you have heard me cry myself to sleep countless nights, and have felt my anxiety and anger. I feel like I try and treat you so nicely but nothing works. You have caused me to shut down around family and best friend because I do not like to see them worry about me all the time. I have seen the stress and concern that you have caused my parents, especially when I was sick every 2 months for 2 years. You have caused us hell – oh, and getting sick on my dad’s birthday a couple of weeks ago, that was really great. Thanks for that one, we really appreciated celebrating in the ER.

I think one of the worst things is that I don’t feel I have an outlet. When I am feeling really bad, I don’t want to be a burden on anyone. I don’t want people to ever think, “Oh, she feels sick again, she never feels well.” I hate that many people do not understand what it is like living with this disease. If you would not make me feel so bad, this problem would go away!

As much as I want to sit here and tell you how much I despise you, I can’t. Although I strongly dislike you, because of you, I have become so strong, an advocate, independent, and incredibly positive.   I know that no matter what, you will never stand in my way. At the end of the day, you are a part of me and I hope that as time continues, we can learn to better work with one another instead of against.

A young woman living with LPLD (FCS)

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