5 Things You Should Know When You're Diagnosed With a Chronic Illness
Welcome to the spoonie family. Although I’m not sure how you ended up here and what illnesses have attacked you, I would still like to say welcome. I’m so sorry you are here but know that I am here for you like so many other spoonies. We are a family and we must stick together and help one another survive.
I have been through a lot and I have lost a lot. My illness has changed so much for me, but it has also taught me a lot.
These are just a few of the things I wish someone would have told me when I was thrown into this life:
1. It OK to be scared.
You have just been diagnosed with something that either has no cure or is extremely hard to cure. Something that attacks you constantly. Your illness could be a life-long fight. It will change you and affect even the smallest parts of your life. That is a terrifying thought.
It’s OK to feel completely overwhelmed. It’s OK to cry. But always remember it’s not OK to give up. I know this is hard to hear right now (or unbelievable), but you will survive this. It will not be easy, but you can do this.
A diagnosis can sometimes be a blessing because with a name comes knowledge. It is not a cure, but it is the first step in finding one. You are strong, beautiful, smart, and you can beat this…But don’t forget that you are still human. You still need to process everything happening to you and allow yourself to feel.
It’s OK not to be OK, but don’t bottle it up and pretend its not happening. Talk to someone you can trust. Write about it so that you can get it off your chest. Heck you can even cuddle up with your dog and tell them about it.
Just don’t bottle it up. You don’t have to fight this alone.
2. You may lose some friends.
I know that several people will probably say this to you, but the friends that you do lose are not true “friends.” It is OK to let them go. I fought to stay with my friends and please them for too long. I put those around me before my own health and it tore me apart. It will hurt when you let these people go, but you need to put yourself first.
On a happier note, there will be friends who will stick by your side and help you through everything you are going through. You will make new friends along this journey who will likely understand you and help you. You may find a community who battle the same things that you do and will understand what you are feeling better than anyone else.
Don’t isolate yourself. Open yourself up to those who can lift you up and help keep you going. Your group of friends may become smaller, but they will be people that you can trust and count on.
3. You’re not alone.
You have been diagnosed with a disease that you probably don’t fully understand. Maybe your doctors don’t understand it either. You have probably lost friends. You have likely lost outside activities like sports or clubs you may have been in.
Your life has changed beyond belief and everything seems to be moving so quickly that your head is spinning. Your life is a mess right now but you are not alone in this battle.
Reach out to other spoonies because we know some of what you are going through. Reach out to family members who you trust and love. Support makes such a huge difference. I battled alone for a year. I didn’t reach out to anyone. I told myself I could handle it all and it broke me. I cried myself to sleep every night and became depressed.
I was miserable and I didn’t know how to fix it. Please don’t make the same mistake I did. If you don’t know where to start in reaching out, talk to me. Message me. I will do my best to hook you up with several different networks. I will be here to talk to you and support you.
4. You will feel guilty.
Taking care of yourself is not a selfish thing to do. Saying no when you have to is OK. Some of us experience severe pain every second of the day. We battle against our own bodies. We wage war against ourselves every day. We did not ask for this to happen. We did not ask for our lives to be turned upside-down. So we should not have to apologize for this.
5. Always remember you are a warrior.
You may hear people belittle your illness. Doctors may tell you that your illness is “in your head.” You may be told that you are seeking attention. People may tell you that you are the problem with the health care system. Do not listen to them.
You did not ask for this. Being in constant, excruciating pain every day is not something that anyone would want. Why would we fake it?
Listen to me and remember these words:
You are beautiful. You are smart. You are strong. You are not a burden. You will survive this.
Your illness is a part of you but it does not define you. Fight. Never give up on yourself.
If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.
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