Coping, Disability, Invisible Illness

A Letter To My Younger Self About the Mysterious Symptoms That Will Change Your Life

 

Dear Younger Self,

I understand that you are having trouble dealing with the strange symptoms you are experiencing. As a 16-year-old high school student, you shouldn’t have to worry about chronic pain, intermittent numbness and tingling in your extremities, chronic fatigue, and increasing weakness. You should be focused on your high school cross-country and track career, making friends, dating, and enjoying life; but, instead you are becoming angry, depressed, and isolating from others. I’m writing this to tell you to get ready because it doesn’t get better.

You will go through years of pain. You will experience new symptoms regularly that your doctors will not be able to be explain. You will be told more than once that you are “crazy”, “a faker”, or that it is “all in your head”. Your parents will be told to get you a psychiatrist. You will suffer through this torment for years before getting any answers. You will be labeled a problem patient by your doctors. It will not get better. You are just beginning this long, painful road of uncertainty, and it will take a enormous amount of strength and persistence before you get any answers or support from the medical community. Even after you get a formal diagnosis, you will still have to fight, so don’t put away your gloves. I’m telling you, it doesn’t get better.

You will go to college, and work a professional career for a while, but it will be a struggle. You will try to hide your symptoms from others and “pass” as an able-bodied person, but you will fail. It will get harder and more painful. Eventually, you will find yourself fighting to prove your disability to a panel of able-bodied people who don’t understand you just to survive financially. You will get some support from your doctors who finally diagnosed you after 15 years of searching; but, due to your rare condition, some of your doctors still won’t understand. They won’t support you or yoIMG_1070ur needs, and you will have to fight. It will be exhausting because by now the fatigue, weakness, dysautonomia and pain have made it so difficult to do even the most basic tasks. The mental fatigue brought on by the immense amount of paperwork you will have to fill out just to prove how sick you are will be overwhelming. Few people will understand the impact of the mental fatigue on someone fighting to prove themselves on a daily basis. I’m writing to tell you that this situation you find yourself in now is just the beginning, and it does not get better.

It does not get better. Your symptoms will increase, and your functioning will decrease. You will experience new symptoms regularly, and every medical emergency or procedure you encounter will increase your symptoms and change the face of your illness. You will have to re-arrange your entire life plan, and you will never realize many of the goals you had as a young person. But, I’m writing this letter to let you know that it could be better than it is for me now. You can save yourself a tremendous amount of heartache if you change your ways, but you must begin now.

You will want to isolate yourself from everyone. You will want to shut out your family and friends, and you will begin to build a wall that will only strengthen over the years. Because of the negative reactions from the doctors, and because you have no idea what you are dealing with, you will stop talking about how you feel. You won’t want to let anyone in for fear of rejection. You must not do this! This is the time to reach out. Reach out to your family and the few friends who have stuck by you. Reach out to the new friends you have met on the wheelchair basketball team that you will join once you realize running is no longer an option for you. Tell them how you feel and let them help you. You cannot do this alone because if you try, you will become depressed, isolated, and angry. You will have mood swings and lash out at your family. You will begin making poor choices and you will stop caring about yourself and your well being. You must let those who love you know how you feel so you don’t feel so alone.

“Your symptoms will get worse, your functioning will decrease, and you will eventually find out that what you are dealing with is a lifelong, chronic illness that has no cure.”

You will want to stop seeking answers. You will go for years without going to the doctor for fear of being laughed at again, or told you are “nuts”. You will suffer in silence with no treatment to ease the pain. You will write off all doctors and vow never to try to figure it out again. This will only increase your problems down the road. You must continue to fight, regardless of what the doctors say. If one doctor shuts you out then search for another one. Don’t get discouraged. You will eventually find the doctor who has the answers, but it will take time and patience. The longer you wait the worse your symptoms will become, and they will not be able to be reversed. Find your doctor sooner rather than later, and begin to learn to manage your health conditions before they become so disabling.

Reach out to your family, friends, and the community for help. Don’t try to do this on your own because you will become bitter toward society. Get involved with support groups (whether in person or online) with others living with chronic illness. Try to find out as much as you can about your symptoms, and educate yourself and others so that everyone can better understand you. You will want to overdo it just to “fit in” with the rest of the crowd. Don’t push yourself, and let others know how you are feeling rather than keeping it all to yourself. Tell them when you are having a bad day, and don’t try to push past your limits just to please everyone else. Explain what is going on so others understand, and take care of your needs. If you don’t do this, then you will cause yourself years of unneeded pain, and eventually you will come to resent your friends and family for “making you feel that way”. You will find that your true friends will understand, and those that do not were not worth the effort anyway.

I’m writing this letter to tell you that it does not get better. Your symptoms will get worse, your functioning will decrease, and you will eventually find out that what you are dealing with is a lifelong, chronic illness that has no cure. It does not get better, but this letter is not meant to discourage you. Just because your symptoms do not get better, it does not mean that your life gets worse. You will find a great husband who supports you through every trial you will face in life. He will be there for you in your lowest moments. Let him in, and tell him how you feel. Don’t try to treat him like you do the rest of your family and friends. You will become closer with your parents and you will learn to include them in your life. Do this sooner rather than later because you will need that support. You will find the friends who will have your back no matter what. They will be few, but they will be lifelong. You will be blessed in many ways, but it will be easier if you follow the rules I have outlined above. It does not get better, but you will survive and come out a stronger person than you were before. This illness will teach you many things. It will teach you patience, compassion, confidence, and it will teach you how to love unconditionally.

As you grow with this illness, and as you learn what it means to have a disability, understand that you are entering a whole new world. You have a choice. You can choose to embrace this part of you, or you can try to run from it. However, I will tell you, this illness will take away your ability to run. You will not be able to run from it. It will follow you wherever you go, and eventually it will make you pay attention. If you try to avoid it as I did, you will fail, and it will take years to undo the damage that will be done. Let go of the running, and learn to live your life as yourself. Be true to who you are, and don’t let anyone tell you otherwise. You are not a “faker”, and you are worthy of the medical assistance that you seek. You will find it, don’t give up. It doesn’t get better, but it will make you a better person, and it is worth it in the end.

Sincerely,

You, in 18 years 🙂

 

2 thoughts on “A Letter To My Younger Self About the Mysterious Symptoms That Will Change Your Life”

  1. Hi My name is Kate and I find myself reading this and feeling just like it’s me talking to myself. Right now however I sit undiagnosed so “rare” they can’t figure me out. So I’m just wondering if you would be able to help just with tip or suggestions how after 15 years you were able to find the “right” doctor!! I’ve been to over 30 just this last 9 months as things are getting worse quickly. Numbness, tingling, I have masses/tumors growing they have biopsied and have come back inconclusive and I have tests that are all over the board. So if there is a doctor or a hospital or a test I’d love to know what led you down the path to getting answers!

    Thank you for sharing your story! I don’t know what you’re going through but I know pain and it sucks and being “rare” sucks so hang in there!!

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    1. I found my doctor by accident when I went to see a neurologist who (like all my other neurologists before him) couldn’t figure it out. However, instead of simply labeling me as “crazy” he suggested it could be a mitochondrial disorder and sent me to a geneticist who specializes in mitochondrial and metabolic diseases. That is how I found my doctor. He is the only doctor who specializes in my condition in the state and he just happened to be in my city. It’s hard finding that perfect doctor who knows what he/she is looking for. Through a ton of coincidences, I found mine. Unfortunately, I don’t have any special recipe for finding the perfect doctor since all conditions require a different specialty, but if you’ve seen so many already and still can’t find an answer I would recommend finding a geneticist who may be able to look into genetic causes of your symptoms if you haven’t tried that already. My best advice is just don’t stop looking. I went to so many doctors and specialists before I found the right one. You will have to as well, but eventually you will find him or her and it will change your life. Even if it can’t be cured it helps just knowing what is causing it. Don’t give up, hang in there, and lean on your support system. Good luck to you, and I hope you find answers soon.

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