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Psychologically coping with Ehlers Danlos Syndrome

Updated on January 9, 2016

Obtaining a Diagnosis

While majority of general practitioners have not heard of Ehlers Danlos Syndrome (EDS), it becomes difficult for them and the patient, trying to figure out why they have so many symptoms of different diseases, but not enough to be fully diagnosed with it. The medicines they prescribe to treat some of the side effects, will definitely help, but it will never fix the problem.

Since EDS is a genetically inherited disease, the diagnosis can only really come from a geneticist who has some knowledge of this particular disease. EDS will continue to be a constant search for answers, some of those answers will never be attained, and each patient should understand that. While some people may have difficulty accepting that, it is inevitable. Once a diagnosis has been delivered, then the patient will have a more specific answer to most of their questions. When the geneticist sends them to a specialist for further diagnosis, they will then have a more specific answer to some of their questions, and begin the search for information about their specific type, while keeping in mind, that most symptoms overlap and additional types may surface at any time.

Treating the Symptoms

While there are all types of medicines and herbal remedies, each patient must first understand that they will only work some of the time. There will be instances where the method of relief will not work, and neither will the other methods. Those are the times where the people closest to the patient, must truly have a full understanding of their condition, and how it is not their fault at all. This disease was not chosen, and can cause an immense amount of pain that no other person will truly be able to understand. Most unaffected people, haven't the slightest clue, as to how this disease works, and how it can vary in intensity, and even vary from day to day.

This is what causes so much confusion between doctors, patients, and loved ones. There are days when the patient does not need the medication, simply because they feel as though they can tolerate the disease. There are other days where the feel as though they need the medication to survive the pain that they are in. Then there are days when they do everything they can, with the medication, and are still completely miserable.

Reading Up on Ehlers Danlos Syndrome

When I had first heard of EDS, three years ago, I searched for it on the internet. Having done so, I was bombarded with information about the disease, all of the sources being written by doctors and scientists, none of whom have this disease, and can only provide test results from their findings. I read as much as I possibly could on the subject, until I started to feel like I was just reading the same information over and over again. There were so many questions I had that were unanswered, and although I had determination to find them, they have always eluded me. This is when I realized that the information I was reading, was only the medical test results, not the personal stories of people who are affected, like me.

While I had done as much research on EDS as I could tolerate, it was never enough. There was still a large part missing in all of the information. While some of the sources had briefly touched on the psychological impacts of EDS, it never really prepared me for what was coming. I never had read any information, that I could truly relate to.

Preparing for the Worst

While I had done my best to prepare for the absolute worst from my disease, and adapted my life as best I could, to keep myself from falling victim to it, I slowly began to realize that it was only helping me a small bit. Since I had read all of the research results I could possibly get my hands on, I felt as though I fully understood the disease and what it meant for me and my life. I had no idea that it was slowly tearing another part of me to pieces, because I had accidentally neglected a huge part of this disease.

While I was preparing for the worst possible situation everyday, pushing myself to my limit, still wearing a happy face through it all, and keeping my voice silent about my illness; I had no idea the psychological impacts it would have on me shortly down the road. I was so worried about preserving the body I have, and making sure that I didn't do anything too severe to cause myself any unnecessary physical pain, taking all of my medicine, caring for my family, going to work and school. I had neglected one of the most important parts, my psychological health through all of this.

Psychological Impact of EDS

The psychological impact of living with EDS is so overshadowed by the disease itself, that most patients develop significant mental illnesses, that could have been easily prevented. When the patient is so concerned with their new diagnosis, they are thinking foremost, of the impact to their physical health, how much it has already taken, and how much more they will have to sacrifice to this disease. Since EDS impacts the patient physically, most patients don't worry too much about the psychological toll it will eventually take on them.

While doing my research, I received countless test results, professional explanations, and professional expectations. However, there were hardly any personal testimonies of people who have this disease, and how they have had to deal with it. After three years of studying test results, and research findings, I finally realized that it was taking a huge toll on me still. I realized that my friends, family, and coworkers had no clue what I was going through or how to deal with it. I knew that I was dealing with it, the best that I could, but I wasn't able to help them understand how it was making me feel from day to day, and how upset I would be over simple things I couldn't do anymore. I found that the biggest struggle for me, was that I was able to do some things in the past, but not presently able to do them anymore. I had done them with such ease, as if it had been nothing. When I had even thought about doing them now, it gave me a headache, and made me very fatigued when trying to do them now. There was not much information about how the disease would affect me psychologically. I had only a very few sources of information in this area. I want to share with people, how EDS changes a person more than just physically.

When you can see the doubt in the faces of the people you are close to and work with, when it is obvious that they don't believe someone who is so sick, can look just fine. They have no idea what is going on inside your body, and the more someone tries to help them understand, the more they try to suggest alternative methods and other things that they heard of through someone else. Though the sentiment is appreciated, the patient already knows that there is absolutely no cure for EDS and they will have to endure this for the rest of their life. There is no way to make the pain go away for good. Outsiders don't understand that this disease is not something that can just be fixed by going to the doctor, or trying a new pill, or an alternative method. While it is frustrating for everyone, it is hardest on those of us who have to suffer through all of this pain, knowing that other people are judging and ridiculing every move we make.

While those of us in this world, who are affected by EDS still have hope for a cure one day, and a better understanding by those around us; that day is not but a faint light at the end of a very long tunnel. There will be many times when we want to just give in to sadness and despair, but the outsiders who put us down, and try their hardest to make us look weak and attention hungry, will end up being the winners. Therefore, we must only cry for a moment, then get up, put on a brave face, and take on the world, once again. We fight everyday to be somewhat normal, because we have an invisible illness, we are often ridiculed the most for what other people see as our short-comings. Those people have not the faintest idea, what it took for someone battling EDS, to even get out of bed, get dressed, and do as much as they already have.

No person should feel like it is their fault, for having EDS. It can be seen as both a blessing, and a curse. Without having this disease, that person might never have discovered their true strength. While this disease will be fought with every bit of our mind, body, and soul, we will still make it through the day, and show the world how strong we are, even through our disabilities.


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