1. A diagnosis does not help people understandwhen even medical professionals have never heard of it prior. The biggest hope that I had for getting diagnosed was the ability to use a label to explain my situation and allow people to gain an understanding with simply one phrase. I thought that a diagnosis would allow others to clearly imagine my life and empathize, but instead I’m left trying to explain my conditions where people are left more confused than clarified.
2. A rare diagnosis does not guarantee adequate answers, help, relief, or belief.The physiological explanations do not ensure that everyone will believe your pain or that anything can be done to relieve your symptoms. The diagnosis can provide answers for one element, but the lack of information creates a new array of questions. It can leave you with lists full of symptoms, where you can never really be certain what the cause of each one is.
3. I shouldn’t be embarrassed, ashamed, or feel the need to hide my reality from others. Prior to my diagnosis, I spent twenty years pretending that I was never in pain and instead was happy and healthy. In the beginning of 2019, I would NEVER publicly discuss anything relating to my health and I thought there was nothing that would change that; but it turns out a diagnosis would. I came to realize that being open about my experiences helps break the silence surrounding the topics of pain and sadness while also spreading awareness. The only way people can truly understand an invisible, rare, and silenced disease is if people living in the conditions speak up and are heard.
4. People rely too much on appearance to judge health, emotions, and disability and struggle to accept any version of the person other than they see. It seems as though no matter what you say, if you still have a smile on your face, everyone will assume you’re fine, not in pain, and not sad. But the truth is, you never really know the pain behind someone’s smile and that’s why it’s always important to be kind.
5. Having medical issues does not make you a burden, it means you were given a burden, which means it’s too heavy to carry on your own. There is not a day that goes by where I don’t feel guilty for the impact that my situation and pain have on those closest to me; but support is a necessity. The pain intensity, lack of answers, no form of relief, and everything else that comes with EDS can easily become a lot to handle and sometimes the ONLY thing you’re able to do is express the pain and emotions to someone else.
6. You are never alone, even when you think you are.For me, the most valuable part of being diagnosed was the ability to connect with others who live a similar life. In one aspect, getting a rare diagnosis isolates you from everyone surrounding you, but in another, it allows you to understand the lives and struggles of a group of complete strangers. Through reading others’ experiences, I have read word-for-word descriptions for how I have described my pain and symptoms. Things that I have experienced, that no one close to me has, were normalized. Although each individual is compiled of unique experiences, there are always others out there who can relate to whatever it is that you’re going through.
7. There will always be people who have their opinions, think it’s all just in my head, or who will never understand. This is always hard, especially when you thought they were close, but their opinion displays their ignorance rather than invalidates your pain. Although this can be an opportunity to educate others, it’s also never my responsibility to convince someone that my pain is real.
8. Sometimes I expect too much from others because I would be doing that much and more for them. During the toughest times, such as after a diagnosis, you learn people’s true colors as you see who is really there for you. You see who checks up on you, asks you questions about your treatment progress, offers support, tries to learn more about your conditions, or ignores the situation entirely. You notice who is supportive and who has no understanding whatsoever. People rarely respond in the way you would expect, but maybe it’s because they don’t understand how difficult it is.
9. Even if someone cares and loves you, their inability to accept and understand your reality can dampen and ruin relationships. This is a very difficult reality that I had to face as I came to realize that a majority of people struggle to discuss and accept medical issues. Although I am not defined by a diagnosis, what I go through physically and emotionally on a daily basis largely contributes to the person that I am. If one does not understand my health, they will only be able to understand me to a certain degree. I never had a choice about living with my conditions, but others have the choice of whether they are going to acknowledge mine or ignore it. Most choose the easy way out, where they ignore the situation and signify a lack of compassion. It is challenging to not take the dismissal personally, but if someone is not going to love me for all of me, which includes the medical mess I am, then their relationship is not really a loss. This also makes it easier to love deeper and appreciate those who are willing to stay and take this battle on with me.
10. The only person you can count on 24/7 is yourself, so try to become your own best friend. This is something I’m still learning how to do, but is something that I recognize to be very important. Pain is continuous throughout the day where the severity and additional symptoms fluctuate. My pain has reached a level of intensity where I am continually struggling, but there are definitely times that are worse than others. During the most excruciating of times, it’s always comforting to have someone there, whether it’s just that they know what’s going on or are lying beside me so I’m not alone. However, as the symptoms and pain are unpredictable and happen throughout all hours, it’s unrealistic to rely on others support to help make it through these times. Since I’m unable to rely on the ER, medications, doctors, or really anything to control my pain and symptoms, I can only count on myself.
11. I’m stronger than I ever thought I was and able to make it through anything. Throughout deteriorating conditions of pain and sadness, I am proud of my strength to persevere. From as young as I can remember, I have been going through a cycle where I thought the pain couldn’t get worse and then would be unfortunately surprised with a new pain at a much higher intensity. Although there is a phase of initial shock at the new severity, I’ve always been able to bounce back, accept this as my new normal, and find a way to make it work. I recognize how much more pain I’m able to handle now, where I’m also able to process it in a more positive way.
12. No one will ever be perfect, stop making mistakes, or stop learning; but that’s the beauty of growth and self-development. Not knowing something or making a mistake is nothing to be ashamed of, but thinking you know everything is. The only competition you should have is against your past self; never compare to anyone else.
13. Surviving is the most important accomplishment. I’moften too hard on myself, especially as pain intrudes on my ability to function freely. I work around my pain and try the best that I can, but I need to get better at recognizing my achievements, both large and small. I strive to complete at least one productive task a day and then continue pushing for as long as the pain will allow. On the days where I can barely keep my eyes open from the pain, I sometimes become frustrated as the pain interferes with my plans and what I need to accomplish in the day. However, I need to get better at accepting that in those times, what’s most important is focusing on surviving, resting, and taking care of my body.
14. Go with the flow and live in the moment; the future is unpredictable. I’m the type of person that likes to plan everything out, so going with the flow isn’t my preference. However, as pain is unpredictable on a daily basis, going with the flow is my only option. As the future holds a countless amount of mysteries, I plan ahead, but take things one day at a time. I don’t know what my pain intensity will be, whether my head will be fixed, whether there will be new medical discoveries, whether my kids will have EDS, and the concerns go on and on. However, there is no sense in worrying about the unknown, so I only focus on the things that are certain.
15. A negative situation can seem like our worst enemy, but really be a blessing in disguise.The negative times are what push you out of your comfort zone, expand your identity, teaches valuable lessons, and questions what you are going to make out of it. Sometimes a little part inside of you needs to die in order to be reborn as a stronger and wiser version of you. Let go, let life strengthen you, hold your head up, and keep going. If you’ve learned from the situation, it was not a mistake.
16. Nothing lasts forever. Things are continually changing, both for better and worse, so appreciate where you are at in each moment. The good days fuel happiness, bad days gain experience, worst days provides lessons, and the best days create unforgettable memories.
17. Live for the genuine moments of happinessand appreciate the small, irreplaceable things. After experiencing such darkness, you find that happiness exists in any situation. These positives help motivate you to preserve through the hard times, and keep you smiling even after you have been broken. Laughter with friends, listening to my pug snore, having my mom’s unconditional support, or waking up to my lab sleeping right next to me. These moments touch my heart and fuel my strength.
18. So much in our medical system and society needs to change. I thought the world had things much more figured out than things really are. I’m gradually learning how little is really known and how messed up aspects of life truly are.
19. It’s okay to not have life completely figured out, none of us do! College is filled with students stressing about their future as they don’t know what career they want, don’t have experience, or are worried about finding a job. The answers in life are never given and no one has everything figured out. You just have to try your best and trust that things will work out.
Wishing you a 2020 filled with health, happiness, and growth,
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