What I Want People to Know About My Disorder

There are a few things about my disorder that I want people to know. 

First and foremost, there is no scientifically proven cure or any cure for that matter. To me, this doesn’t mean I just give up and suffer, it means I do everything in my power to improve my quality of life and accept that that won’t always be enough. 

Second, I am not nor will I ever be again “normal”. What I mean by this is, I will never again be the same naive teenager as before.  From experience I know what it is like to have someone you love to be diagnosed with an auto-immune chronic illness, and it is completely different knowing it is you that has it. I won’t ever view things, feel things or experience things ever the same as before. 

Third, there is still a lot about this disorder that is very misunderstood and under-researched. It causes a plethora of symptoms, some of which are disorders in themselves. For example, fibromyalgia, IBS, OBS, and many others. It doesn’t necessarily mean I will have these other disorders either, just that there is that much more of a possibility. I have a variety of symptoms that come and go, it causes such a spectrum of things it’s hard for people to understand where it is all coming from. For me, it has caused some OCD tendencies that range from organizing only the top shelf in my fridge, to not being able to wear jeans. Symptoms can be triggered by something as small as a migraine or as big as a car accident or other physical trauma. They can also be triggered by illness, anything from a cold to pneumonia. 

Fourth, I don’t want to make anyone pity me, I just want to be somewhat understood. My preferred method of coping is making jokes out of the new challenges in my life. I do this not because I don’t take them seriously but because on a normal basis I enjoy laughing and living in a pink bubble. I’ve noticed that some people might get quiet or a little uncomfortable and I totally get it, just know it’s okay to laugh with me when I bring it up. A lot of the things I do are a little wacky, and also non-life-threatening so, really it’s okay to laugh too. 

Fifth, I  have done tons and tons of research. I use a variety of treatments and I am continuing to learn every day. I appreciate everyone trying to help, but there gets to a point when it’s no longer helpful. When people constantly question if something is real, or if you aren’t doing enough to help it, it not only angers me but it makes me subconsciously question if I’m crazy. Belittling symptoms that I deal with daily by suggesting things that I have undoubtedly tried or have nothing to do with my disorder, isn’t fair to me or anyone else with F.N.D. I am willing to try a plethora of treatments and I have, but I understand that for my disorder I have to have a team of things to provide the best outcome. I personally don’t believe that one doctor or treatment will be the end-all cure-all for me, and luckily I am an adult and can choose my own path of treatments. I really do appreciate people who care and just want to help, I just want people to keep in mind that when suggesting that I change my diet (I have by the way), or to just try this one amazing thing, makes it seem like my brain disorder is no big deal and something so simple can surely cure it.  

Overall, I am so thankful that I have so many people in my life that are concerned and want to know more about my disorder and how it affects me. I just wanted to lay a blanket disclaimer for anyone who wants to know.

Thank you so much for reading and supporting me! Let me know if you have any more questions in the comments!