As we hear so much about the importance of keeping fit, our heart health, and ensuring that we keep the big illnesses at bay, it can seem like a punch to the gut if you’ve been diagnosed with something that’s, not just rare, but is something you’ve never even heard of before! No doubt, you would have many questions, and when you don’t know what’s going on inside you, it’s not just infuriating, but it is downright scary. What can you do if you find yourself in such a situation?
Getting The Support Around You
What is crucial when in such a situation is that you have the support network around you. While you are, in many ways, going through this yourself, you should never feel like you are alone. You can call upon friends or family, but also, think about the professional help, such as Alexion, who provide support for sufferers of specific rare illnesses. But regardless of how you’re feeling, it’s important that you know that there is support out there for you. We should never feel like we’re going into something all alone. And yes, we are going through this “alone,” but we could find online forums, so, at the very least, there is someone out there who knows exactly what you are going through. And at the same time, when people are trying to support you, don’t alienate them. Explain to them exactly how you’re feeling, so they can help you better.
Finding A Specialist
Finding the right specialist can take time, but it all depends on the symptoms. Going to a doctor is always the first port of call, but you may want to begin your search with a specialist like a geneticist. There are so many rare diseases that have a genetic aspect to them, this may very well highlight the root cause, or at the very least, shed some light on the subject. From there, fingers crossed you receive a diagnosis, and then you can speak to a specialist. It’s always worth doing your research to find who the experts are in a specific field, as well as specific umbrella organisations for rare diseases. When you look to these foundations, they can provide professional support as well as emotional support.
Don’t Lose Hope
Sure, it’s easier said than done. Some people spend decades researching what’s happening to them and hoping to find a diagnosis. Sometimes, we can have that drive for a cure because it’s someone like our child. But when we are going through it ourselves, we may very well feel the inclination to give up every now and again. But we have to remember that it is a long battle. There are many people that were diagnosed after a long time of searching. And sometimes it can feel like there is no official diagnosis for what you’ve got. But also, think about the doctors that you are speaking to. Some doctors are very thorough and caring, but some can be downright terrible. This is one key component to finding, not just a source for what you’re feeling, but also, giving you the tools to cope with it.
