The emotional impact of having any disorder can always be a challenge, but what about dealing with the fact some people more than likely have a rare disorder that very few people and even doctors know little to nothing about? Then starts the search for proper emotional supports from those you love, but many times people end up being forced to finding others to talk to when family just isn’t able to provide proper support. A big area that tends to be utilized for emotional support when dealing with rare disorders in online of course!
I agree, this sounds pretty sad when someone should be able to rely on those they love but end up having to use other sources for support. Sadly, this happens but it can also help open a whole new world up when a person has to reach out further than others do. When it comes down to rare disorders and coping, if the person’s family has little involvement, the best advocate and knowledgable person on the rare disorder is going to be the patient themselves of course! This is a huge challenge at times when the patient may know more than many doctors do. Due to the lack of medical experts actually knowing the ins and outs of such disorders can make coping even harder at times.
Why am I talking about rare disorders and emotional coping? Well, to be honest, I have been told recently I more than likely have Sticklers Disease (I was told it was probable for years and never thrown out as it also runs in my mothers side). It is a rare genetic disorder of the human body’s connective tissue. It has taken years to figure out why I deal with things in such a variation when it comes down to dealing with chronic pain and subluxating (partial dislocation) of many joints, it was confusing at times too. I also understand how challenging it is to find someone to talk to that will at least just listen and tell you they will be there for you no matter what. Sticklers has been known to cause eye problems, ear problems and has unique facial features (many times loss of sight and hearing can occur). Every person who has it is affected differently, thus shows problems in many or very few areas. At the moment I was told so far only my joints, a variety of muscles and my lower jaw is affected. There is so much more involved with this disorder that maybe I will have to hit on it in a different article. But it is another one of those invisible disorders (unless you currently have an area drastically affected) that people tend to misunderstand greatly because you can not always physically see the problem. When I describe it, I usually just mention the main point to this challenge is how the connective tissues are affected and that means throughout the entire body! These tissues begin to deteriate, in which results in a variety of organ damage, such as the joints, nerve tissues, and tissues that hold organs and/or make them function appropriately. Some people will go on to develop more challenging areas, and others will stay within the problem areas but they will continue to get worse over time.
Dealing with the lack of research, misunderstandings from friends/family, to finding a doctor who actually knows a lot about, or knows anything, your rare disorder can make coping a huge challenge. So currently I am researching some areas my doctor told me about and searching for other areas for support and coping. It really is hard to deal with such rare disorders when there is no treatment or cure, other than treating symptomatic problems as they occur as best as possible. Keeping your therapists close to you, which means telling them about your other medical problems, so you will always have a professional to help you if you find yourself in a deep, dark whole. We deal with issues as they come and go. Good days and bad days will roll by, but it’s always a challenge to get loved ones to understand that as well. Sometimes issues continue for weeks, months, or years before the issue calms down or is treated successfully. Adding this on top of Fibromyalgia and other things just makes a person’s world seem so unjust at times, but dealing with a lack of support hurts even deeper.
Coming Soon! More on things I have been researching or what I have found to help those coping with rare disorders.