February 28, 2025
Today is Rare Disease Day. This is a global campaign to bring awareness regarding the impact rare diseases have on patients' lives and to advocate for their needs.
I have two rare diseases; one is Trigeminal Neuralgia, and the other is Visual Snow Syndrome. The Trigeminal Neuralgia was diagnosed in 2004 after it was heavily triggered by my ADHD medicine, but I had pain for ages, so I really don't know how long I had it, it just worsened in '04. The Visual Snow Syndrome was just recently diagnosed but I have always had it...I thought this was how everyone saw things...apparently not.
This is the reason we need days of awareness for rare diseases, so we don't go undiagnosed for decades thinking this is just how life is, that if we knew sooner, maybe we could have changed the long-term outcome of these diseases. Plus, if there was more awareness of these diseases maybe we could get the help we needed to keep our jobs or find other ways of working with our disease.
The Trigeminal Neuralgia was absolutely life altering, the pain, incredibly unbearable. It took me almost 15 years to finally get 'use' to the pain...now I'm not saying it doesn't still hurt, but I know more about it...what are some triggers, what I can do to maybe prevent it, what I have to do when the attacks are beyond what I can handle, and so forth. But I had to learn all of this on my own, all while talked down to by numerous healthcare professionals along the way. It has been a very painful, lonely, long, miserable experience, and I basically still have to deal with it on my own. People don't understand, not even healthcare professionals, the impact such a disease has on a person, and it is all consuming. It is always present, some days it's ok, I can handle it, as again, I am used to it now after 21 years of suffering, but some days, I can hardly even think, the pain is so numbing. I have tried all kinds of medication, therapies, at home remedies, etc., and some days they work-ish, but most often I just have to ride out the pain and hope tomorrow will be better.
As for the Visual Snow Syndrome, I actually thought this was normal. I had mentioned this to doctors a number of times over the decades, but they just disregarded it until this past year when the optometrist finally said this was what I had. It makes me dizzy, makes things very hard to come into focus, and at night it makes things even harder to see. In complete darkness I can hardly make my way around unless I know the area and move slowly while reaching out to find what is around me. I don't drive at night because the glare is unbelievable, and with the Trigeminal Neuralgia, the pain from that glare is like being stabbed in the eye and temple. And yet people just don't understand when I try to tell them these things, they just make light of my situation, like I'm making too big of a deal out of it.
I'd love to have a job again. I enjoy being out and around people, but I can't with the Trigeminal Neuralgia (and other chronic pain I have) as my body is unreliable, every day is different. If I'm driving, I don't dare go out if I can't be home before dark as I just can't drive at night...it's far too dangerous for everyone. So, I just sit at home and pretty much wait out my life. Yes, I am trying my best to make changes, but some things will never change, and I have come to terms with that. My life revolves around my illnesses, and it's a shame that I have to live this way, alone, with little understanding from the outside world because they just aren't aware of the consequences these diseases have on me. I wouldn't wish any of what is wrong with me on anybody, but I do wish they could be more aware and understanding of what I have to deal with every day of my life.