According to the National Health Council, approximately 133 million Americans have a chronic illness. That’s a whopping 40%! Now, that includes illnesses like asthma that may not make you feel like you fall under the chronic illness umbrella, but it also includes diseases like rheumatoid arthritis and Crohn’s. If you’ve been recently diagnosed with a chronic illness, you might be wondering what to do next. I asked a bunch of people with chronic illnesses what they think you should do when you’re first diagnosed, and it’s all great advice. I hope this helps you!
1. Be gentle with yourself by letting yourself be upset for a while – “Grieve. Scream. Treat yourself to a seemingly ridiculous degree because you deserve it. Be angry at the people who told you nothing was wrong with you and made you feel like it was all in your head. Book a therapy appointment or find a local support group to vent your feelings. Look at Buzzfeed LOL or watch your favorite comedy TV show for a while to hide yourself from your emotions when you can’t deal for a while. You cannot skip these stages. You likely will not be okay for a while, even though there may also be a sense of relief and validation that comes from finally knowing a little bit more about what’s been going on with you for some time now.” – Emmie from Illness to Wellness. Follow her on Twitter, too.
“I’m not going to lie, it’s not going to be easy. It took me more than a decade to come to grips with all these diagnoses. Allow yourself to grieve, cuss, mourn. And know that it’s okay for your identity to evolve. In fact, it’s healthy to grow and change as a person. Know that who you are as a human being isn’t defined by what you do. What you do, is a reflection of your values and who you are.” – Sherly of A Chronic Voice (more from her below).
2. Be helpful to yourself by finding what it will take to get back up again – “You can’t hide or cry forever. It’s time to relearn your own strengths and limits, as well as to decide what’s really important for you to do with your one precious life (especially if your condition limits the amount of time that you will live). Learn about your condition. Scour the internet for things that have helped other people in similar situations (https://illness-to-wellness.com/2016/10/17/25-of-the-most-important-concepts-i-learned-at-mayo-clinics-pain-rehabilitation-center/). Talk to your practitioners about what’s most important to you in life so that you both know what your treatment goals are. Connect with other people, whether online or in person, who have the same condition (the “spoonie community” is huge and surprisingly full of people with rare diseases) so that you feel understood and encouraged.” – Emmie
3. Create a new sense of normalcy – “There will be moments where will feel badass for surviving it as well as you do (https://illness-to-wellness.com/2017/07/14/30-unique-skills-of-people-who-live-with-chronic-health-conditions/). There will be moments where you will feel bitter and little else. Especially if you are aiming to have your “old life” back, you will find yourself being bitter and stuck for a long time. It’s important to start again. First, see if you can healthily find a way of adjusting your valued activities to meet your new normal, but if there are some you cannot, grieve the loss and move forward, despite your grief. Grief is lifelong. You will never “get over” the myriad losses that accompany chronic illness, but you will get through them.” – Emmie
4. Get as educated about your body and condition(s) as you can – One of the most important things we need to advocate for ourselves is knowledge. We have experience but need ways to translate it for our providers – which means knowing medical terms, symptoms, etc. – Kirsten from Not Standing Still’s Disease. She’s also on Twitter and Instagram.
5. Track your symptoms and issues to address – “Whether it’s daily or last-minute writing down symptoms since your last appointment, bringing updates about how you’ve been doing as well as issues you want to address.” – Kirsten
6. Get a pet – “Having guinea pigs has been one of the best things I’ve ever done. They help motivate me to get moving, give me snuggles when I need them, and don’t judge about my invisible illnesses.” – Kirsten
7. Get another opinion – “Always seek a 2nd, 3rd, 4th, 100th opinion if you disagree with your doctor, are looking for more treatment options, wish to confirm your own ideas, or simply because you don’t trust or get along with your doctor. You’d be surprised how polar doctor opinions can be. One might say your only option is to cut out your entire cervix, another might say surgery is good enough for now (true story). You will have to work with these doctors for life, so choose one that you like and trust.” – Sheryl of A Chronic Voice. Check her out on Twitter and Instagram.
8. Hang in there – “On the tough days when you might feel totally hopeless and the pain is overwhelming, focus on simply making it through. Break the pain down into ‘bite-sized’ pieces – don’t deal with all the ‘what ifs’ and ‘for how long’. It is simpler to defeat pain one minute or even one second at a time. I believe in you!” – Sheryl
9. Be your own advocate – “While it can be extremely overwhelming at first, keeping well informed of the condition, medication and the latest research can actually be really empowering. Make sure you use hospital appointments to your advantage: go armed with questions and make sure you get as many answers as possible before leaving. Using one of the many tracking apps on the market can be a good way of keeping an accurate record- which you can then show your doctor. Always make sure research is done using reputable websites. Forums can be great for meeting fellow sufferers but make sure you do plenty of your own, factual research too!” – Jenna from A Balanced Belly. You can also find her on Instagram.
What tip would you give someone who has been newly diagnosed with a chronic illness?
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