You’re allowed to be scared. Finding out you have a disease that has no cure is scary. Finding out that you will be living with this for the rest of your life is scary. Finding out that you may get worse is scary. Having to explain to your family and friends that you’re never going to just get better is scary, but you can do it. Because you’ve survived this long. You’ve survived all the months and months of appointments and tests searching for answers and maybe it’s not the answer you were hoping for, but it’s an answer.
Yes, this is going to change your life. You may not be able to do all the things you had planned. You’ll probably end up spending a lot more time at the hospital and in doctor’s offices than you do out with friends. But it can also make your life fuller. Every time you are able to go out and spend time with friends you will appreciate it more. You gain this deep appreciation for very little things in life, like being able to go for a walk with your love or cuddling up with a child or a pet. Somehow I think being sick seems to make you love deeper. You may appreciate the little things you used to take for granted, like being able to cook a meal or read a book or take a nap or simply spend an hour laughing with a friend.
Yes, you may lose some friends. Some people just do not understand or become too overwhelmed with all your medical stuff, but that’s OK. Because the friends who stay, the friends who keep texting you even when you don’t answer for days, the friends who want to know all about your life and don’t mind listening to you vent, the people who don’t care that you can’t come hang out with them because that’s what text messages and FaceTime are for, the friends who when you tell them what illnesses you have Google it and find out as much as they can about it because they care about you and want to know, the friends who refuse to let you push them out — they are the ones who matter. They are the ones who will still be there when the dust settles.
I’ve honestly been amazed at the support I’ve gotten from people in my life. My friendships have become so much more important and special. I’ve truly learned that I have been blessed with so many amazing people in my life. Getting diagnosed with rare diseases isn’t really the easiest way to find out who your true friends are, but it’s certainly effective.
Having a rare disease gives you a chance to make new friends, too. There’s this whole world out there of people just like you who are living life with rare diseases. Literally a whole world at your fingertips thanks to social media. In the last two years since being diagnosed I have made some of the best friends I’ve had in my life. I’ve made friends from all over the world. People who understand me and what I’m going through on a daily basis. People who aren’t ashamed to talk about all the embarrassing parts of being sick. People who will make you feel normal. People who will make you laugh at the fact that you fell asleep on the bathroom floor for a few hours. People who also have painsomnia so they are always up for late night chats. I’ve learned so much about other cultures and other countries during those late night chats. I’ve also learned how badly I need to go visit New Zealand.
You might see the people in your life so much differently and appreciate the little things they do for you so much more. You may realize there are so many wonderful people in this world who want to help you, people who want nothing in return but a smile and gratitude. It can be hard at first to accept the help if you’re so used to being independent and doing things for yourself, but let them help. The people that know you and love you are feeling just as helpless as you are right now. They want to help you but they have no idea how. They hate seeing you suffer and wish they could take it away. So let them help. Let them come over and clean for you or come make dinner for your family. Let them take your kids for awhile so you can take a much needed nap. Because these people love you and they may need to feel like they can make a difference in how you feel. Plus, that’s one less thing you need to spend your limited energy on, so you can have a little more time you can spend snuggling with your kids or a chance to go on a date with your love.
Never lose faith. This one can be hard on the days when you are so sick and see no end in sight but I think it’s extremely important. When you are living in a body that’s constantly battling against you it’s so important you don’t allow yourself to get stuck in your own head. It’s not easy. It’s probably going to be really, really hard and you aren’t expected to stay positive every single day, but I think trying to find a small blessing in each day is so important. Before you go to sleep just think of one thing that was great about that day. Maybe it was just that you had some really good food or something your child said or did. Just find it.
Always look for the light because it’s always there, sometimes it’s just a little harder to find. To quote one of my favorite book series and favorite characters ever: “Happiness can be found, even in the darkest of times, If one only remembers to turn on the light.” – Albus Dumbledore
You might have some crappy doctors, but don’t keep them. If you feel like the doctor you are seeing isn’t helping you, find a new one. If you feel like your doctor isn’t listening, find a new one. The relationship you have with your doctors is going to be so important in your life now. So don’t waste your time on ones who aren’t concerned about your well being. Make sure you have an open-minded doctor. You need to have a long relationship with this person and the best ones are the ones who are willing to look outside the box. The ones who aren’t afraid of you because you have a condition but instead are interested in you and want to make your life as good as possible.
Do your own research. Don’t just trust your doctors to know what’s best for you. Join online support groups for people with your illness and learn as much as you can. Research the medicines they suggest. You may find information about treatments for your illness that your doctors haven’t heard of yet.
Most of all, just remember this is an unexpected detour and you’re allowed to mourn the life you planned. That’s normal. That’s healthy. But eventually you will have to get up, dust yourself off and start to live again. Your life will never be the same but that doesn’t mean it can’t still be amazing. On the days it becomes too overwhelming and you aren’t sure what to do, reach out to those who love you. Or find a therapist. Many spoonies see a therapist to help them deal with the loss of the life they planned and the stress of life as a chronically ill person.
But please, never forget that I’m here. I understand. I’ve been exactly where you are now and even if I can’t physically be with you, I’m always just a text message, phone call or a video chat away. If you need someone to vent to, cry to or simply to yell about how unfair life feels.. I’m here. I love you and I’m not going anywhere because when I was in your shoes, you never left me.