A letter from Lindsey to her rare disease. Lindsey is a young woman living with Familial Chylomicronemia Syndrome, a rare genetic disorder in which the body does not break down fats correctly.
Help raise awareness for rare diseases and share her powerful letter. Don’t forget to join us on February 29th at the Massachusetts State House to recognize Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease.
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 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, but really, I only have a bite and the next day you 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 perfect (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 nearly more than 30 times, one attack almost taking my life. I know that I have caused a couple of those attacks with poor choices but the rest is all you. I know you have heard me cry myself to sleep countless nights, 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 am so tired of seeing them worry about me all the time. I have seen what you have to my parents, especially when I was sick every 2 months. 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, incredibly positive. I know 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.
Lindsey, a young woman living with FCS (LPLD).