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My Life with Chronic Illness

Note: I will not receive benefit from any of the links below.

I have immune system deficiencies (along with a bunch of other things), which mean that it is not a question of if I'm sick, but a question of how healthy do I feel today. This will be for the rest of my life. My gratitude journal has helped me focus on all the health that I have, rather than the health I do not. There are so many people worse than I am and it has helped me to better appreciate the people around me, as well as the day to day improvements. Here is an example of a journal format that I have have found useful.

I am unapologetic for times that I refused to make plans until last minute, said no to going to places with large crowds, or prattled on about my condition when asked. I put in a lot of time and energy just staying alive and out of the hospital. I have missed so many fun parts of friend's and family's lives because I wasn't feeling good. If I'm prattling on, it is likely because knowing and understanding me, includes my conditions... So you better understand why I have limitations and why I back out or avoid some things.

Here are a few good articles I have found, which might help you better understand what I'm going through, as well as some links to information about my condition.

Lots of people around the world with immunodeficiencies just like me count on healthy folks to donate blood plasma which is used to make medications to help us. So if you’re healthy and able.... please donate! There are so many places to donate, I couldn't list them all, but here are a few useful links. Chronic Illness is an illness that you cannot look at someone and say - Yep. I know she has it. I will likely have this for the rest of my life. There are too few people with this issue, and so too little research on ways to solve it.

I have luckily found several Facebook groups, where I can talk with others with my same condition from around the world. There are not a lot of us, but it is so nice to hear that I am not alone. Unfortunately, the condition can run in the family. I do have family who also have the same.

Best of Luck to all of you out there with this! Those who have friends or family out there with this, just know that the person in your life with this is mostly looking for understanding and to not feel like we are disappointing the people in our lives by missing things because of this illness we cannot control. We are looking for someone who can help raise our spirits, as it is very hard to stay positive thinking when you are so frequently feeling so bad. Someone to help us to feel a little bit normal, even though we are planning our lives around our treatments and staying alive.

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