Typically when I hear the word “family” the image that comes to mind is that of the people that birthed or raised you and your siblings. Maybe even cousins come to mind as well. Since beginning this autoimmune journey, my idea of family has changed. My blood family rarely wants to hear about or discuss my conditions. Certain family members seem to act as if it is not happening. Others seem to think that I am making it up or exaggerating my conditions to get attention.
Through this journey, I have met others going through the same things in some online support groups and I’ve got to admit that some of them have become more like my family than the one that I was born into. They are not afraid of my condition. They don’t mind hearing about it and giving advice (amazing advice I might add). Through these groups I have found that I can access at least one person willing to talk 24 hours a day, and yes I have had to reach out at all hours of the day and night.
The lack of family support in my life has lead to many sleepless nights wrestling with unbearable depression. It’s quite saddening when the people that you have literally spent your entire life with don’t want to be a part of what is now your most difficult battle. In my case, I was given a limited amount of years to live. Although I recognize that this is a difficult thought to process for them, it is and has been equally difficult for me to process as well. It makes me wonder why in the world they want me to deal with this (and possibly die young) feeling alone and ostracized.
I have to give credit where it is due. Although some members of my family are not on board and part of my support, I do have some amazing family members that are absolutely on my side. I have an amazing husband who never falters in his support of me. He has picked up the slack that my conditions have created. He never expects more of me than I am able to do, he never makes me feel bad about being sick or not being able to do what I used to. Without him and his unwavering support of me I would be a lost puppy dog in this cruel world. My children are my biggest supporters and have really jumped in and starting helping out around the house much more than they should have to. I have been 100% honest with them about my conditions from the moment of my diagnosis. My youngest son, who is autistic, is my biggest and best caregiver. He always reminds me to take my medications and rest when I need to. Sometimes I feel bad for my children losing a part of their childhood to take care of me, but I am blessed to have them on this journey with me and I know that they would not have it any other way!