Chronic Illness Chronicles

Advice is hard.Advice means I understand everything happening and have enough knowledge to help. In some ways I do, and I’ll share that with you. Others all I can offer you is support, love, a listening ear, a hug, and compassion. 

My biggest advice: Keep going. Keep f***ing going until you get those answers, until a doctor listens to you, until they run that test, until you feel validated. You never stop fighting for your life. It will be so hard some days and on those days you let yourself feel all those emotions, but the next day you pick back up and you keep going.

My (unprofessional) medical advice: Advocate. In my experience over the last 6-7 years of searching for answers, most doctors don’t really care. A lot of doctors will dismiss you and tell you it’s all in your head. It’s not. You advocate for yourself and those who suffer from similar struggles. You find the best doctors in your area and you wait 4-7 months to see them. Because at that appointment you waited half a year for, you get answers, you get treatment, and you get validated. With treatment comes trial and error but you.have.to.try. The meds they will give you take time to work. And when they do work or don’t, they will need to be adjusted. But you must try.

My mental state advice: Focus on you. Validate yourself. What you are going through is HARD. Harder than most people can handle, and on some days harder than you feel you can handle. But you can. Cry, cry it out. Grieve. You will go through all stages of grief. That’s okay. Not many will understand and that is hard to accept. It can also be hard to accept those who will try to understand because you just want to yell YOU DON’T GET IT. I am here to tell you that all of those thoughts are okay and valid. Join support groups, there are so many out there you will find one that makes you feel safe and welcome. Let yourself rest, chronic illnesses take a massive toll on you. Watch your comfort show a million times. Cuddle with pets. And please, go to therapy. 

My advice on friends: You will lose A LOT of friends when you are sick. Friends you thought were level 10 friends drop to a level 3 friend, friends you thought were a level 2 friend rise to a level 10. Losing those friends, at any friendship level, is hard. On top of everything else you feel 10x more lonely and isolated. Most friends will try to understand and be supportive. Some friends forget you’re even sick or do not think of it as a huge factor. Let them. If those friends have compassion, still talk to you about regular things, and invite you to hangout, let them forget you’re sick at all. You need some friends like that. Some friends will ignore your illnesses, because they can’t grasp it, they don’t want to because it’s too hard for them to see their once lively, bubbly, adventurous friend become an entire new person. It’s too hard for them to believe what you are going through.You will learn that that is okay. Because at the end of the day they love and care about you so much. Find a non chronically ill friend that can support you no hesitation. But find many chronically ill friends that 100% understand what you are going through. 

My love, care, and compassion: Give yourself grace. Grace to relax, to take a step back from work/school/obligations, to focus on you. Allow others to care, in whatever way that may be. Let yourself rest. PLEASE if nothing else let yourself rest. Use those spoons wisely. Heat/ice rotation. Elevate your feet. Shower chair. All the things heated(blanket,socks,etc). WATER. And please take your meds.

You ARE so strong. Believe that, especially on the hard days. You will get to a more manageable state. Take flare ups with caution, they are so hard, but they will get easier to prepare for.
Most importantly, know that you can do hard things and you always have me to talk to❤️