When I first started this blog I was 22-years-old. I was learning for the first time that a lifetime of symptoms weren’t a result of anxiety or boredom or hysteria. Even though I wrote dutifully here for many years, it took me even longer to really find my voice.
And when it came to the people who tried to “shame away” my disease…
And the doctors who ignored my symptoms and refused to run the most basic of tests…
And the healers and hacks who tried to scam me out of thousands to cure my illness….
I felt that voice rising up in me and do you know what it said?
I used to think I needed to be calm and collected in every exam room. I used to be afraid to show any emotion at all in the face of a doctor who might brush off my disease as psychosomatic. I used to feel like I had to follow a rulebook of perfect etiquette just to be taken seriously when I was living in agonizing pain.
Maybe it’s the fact that I finally was diagnosed with an undeniable, physical illness that I could have in no way faked, that showed up in blood tests and MRI’s and pathology reports.
Maybe it was finding myself outside of my illness– having my book become a best-seller or getting married to someone who loves me completely and entirely, or sustaining a kick-ass career through the dizziest, most chaotic time of my life…
But I simply can not hold any more space in my life to give any more shits about people who were too inadequate at their profession to diagnose a very diagnosable disease, or people who didn’t have it in them to show up for me in ways that I showed up for them, or peoples whose reputation I beat around the bush trying to protect because I was ashamed about just how much of a ride I got taken on.
So here’s what I want you to know, what I wish I would have known at the start of this very long and strange journey:
- We have barely scratched the surface of diagnostics. Doctors aren’t gods and the ones that claim they know all and have seen all are not the doctors you want to put your life in the hands of. Fight your ass off for genetic sequencing and demand every test, every exam and follow every hunch until you find the reason why you’re as sick as you are.
- DIY your own recovery as you go. In all my years–through the multitude of abdominal surgeries I underwent that destroyed my abdominal muscles not one single surgeon or doctor ever wrote for physical therapy for me. No one ever even suggested it. It blows my mind how no one thought to introduce me to the world of pelvic floor therapy or physical therapy. Diagnosis or not–don’t let your body fall further into disrepair when you have a chronic illness. Get your PT on! NOW!
- Take charge of your mental health. You may be hearing “it’s all in your head” when it comes to the physical manifestation of your disease, but what you fail to hear is “it’s a lot of fear and anxiety and stress to manage a chronic illness and you deserve support.” Find yourself a good therapist, someone who pushes you to keep going when the going gets tough. Who won’t let you wallow in depression and who will intervene when the stress gets to a boiling point. #TherapyisCool
- Don’t let your disease define you. In the beginning it may seem enticing to join a thousand support groups and lament in the misery that is the reality of your disease. But you’re not just a Spoonie or a Warrior— you’re a whole YOU–Made of a million different pieces. Don’t box yourself in on the worst part of your existence, Have support and be supportive, but don’t let it be your identity.
- Stop falling for scams. If they found a cure for cancer, it’d be front page news. If they knew of a diet that reversed a disease, no one would keep it a secret. And the same goes for cure-all clinics that don’t take insurance and Dr. House’s who will give you all the time and sympathy in the world (for enough money) but won’t give you a straight answer on what’s wrong and how to fix it. Stop joining multi-level marketing schemes whose 20 supplement a day regimen claims to cure everything from rheumatoid arthritis to pancreatitis. Think. Research. Investigate.
- Keep living every part of your life, even when it seems impossible. Because you won’t always be this sick. It won’t always be the focus of your existence. You need friends, and family, and an education. You need a career that gives you purpose. You need love. You need to explore your talents and dreams. You might have to do it from your bedroom or your bathroom floor–but keep your head up and live as much as you can. Impossibly, unimaginably — life goes on. Go with it. And don’t be afraid that enjoying small moments will somehow hinder your road to a diagnosis.
- After all, what’s the point of fighting so hard to live if you aren’t creating a beautiful life?
I want to thank everyone who has followed me and this blog for so long. Who has asked about my health and sought me out for answers. And I want to clarify: I wrote my book for you: the askers. It has everything important I have to give in terms of life advice with chronic illness. I’m continuing to create resources and working with companies to help create a more accessible world for people with chronic illnesses.
But I’m not a personal advocate. I don’t take on singular cases. I don’t have recommendations for great doctors or miracle meds. I can’t diagnose you and I’d never want to mislead you that what I’ve been diagnosed with is what you will be diagnosed with. Pursue your own journey, take on your own investigation. I have so much faith in you. Keep going.