17 Tips If You're New to Chronic Illness, From 'Veterans' Who've Been There

It takes time to figure out how to live your best life while dealing with a chronic health condition. There’s a steep learning curve as you navigate doctors’ appointments, changing friendships and life-altering symptoms for the first time — especially because healthcare professionals probably won’t tell you exactly how your illness will affect each and every part of your life.

There’s no manual for living with chronic illness — but there really should be. So we asked the “veterans” in our Mighty community, those who have years of experience dealing with their illnesses, to share their advice for the “newbies” who have just entered the “chronic illness world.” You don’t really “get it” until you “get it,” and these veterans have been where you are and know what it takes to get through it.

Here’s what our community told us:

1. “There will always be people who don’t understand it. They say to just take some Advil or to get some vitamin D from the sun. But that, in no way, invalidates your illness. They simply don’t understand and probably never will. You have to learn to ignore comments like that.”

2. “Pacing: pacing is key, even on a ‘good’ day, do a little, rest, do a little, rest. It can help to time yourself doing certain activities such as housework or school work so you learn your own limits. Make sure you take a break before you get completely exhausted. It will vastly expand what your capable of achieving during the day. Rest when you need, listen to your body.”

3. “When people (including doctors) want to silence you, don’t be silenced. If you don’t believe what the doctor tells you, do your own research. Be your own advocate. Enlist your close family and friends to be your advocates.”

4. “You are not your illness, and your illness is not your fault. I wish someone had told me this sooner than when I heard it, but put one foot in front of the other, take all the time you need, and don’t let anyone make you feel inadequate or guilty.”

5. “I’d tell them to never stop trying to improve their quality of life. There may never be a cure, but there’s always things out there that make life easier and people to love who make life worthwhile.”

6. “Don’t be afraid or feel guilty to say no to anything or anyone. The only person you need to look after is you. If you need a nap, take it. If you need pain relief, take it and if you need to chat or vent there’s a good chance Facebook has a group for your condition or go to your GP.”

7. “Diagnosis is not finality. Your first year of diagnosis will be the most overwhelming year as you learn to navigate meds and appointments but hang in there, it will become less overwhelming with time. And finally, remember one person’s experience may not be your experience. In autoimmune disease each journey differs from person to person. Don’t become discouraged hearing another’s experience.”

8. “Take one day at a time. Some days take minute by minute or hour by hour of need be. Let yourself feel the way you feel; don’t bury your feelings. Be mindful of your thoughts and mindful of what’s around you… there is always something beautiful around you to focus on.”

9. “Your circle of friends will change many times, it’s going to hurt at first. Remember to use your story as it changes and grows to inspire others. Each day is a blessing even the toughest ones, embrace the smallest joys, the laughter and even the pain. Help yourself by researching every detail of your illness become an expert, and never ever give up!”

10. “Don’t go at it with a ‘me against my illness’ mentality because your illness is a part of you, whether you like it or not. Love yourself, rejoice in the little victories, and be the voice of optimism. Even if it’s all a front at first, that optimism will slowly become genuine. I won’t sugarcoat it, this will suck so much at times, but it will also bring you unfathomable joy with every little milestone, with the amazing people who you meet who stay beside you through it all.”

11. “You are not alone. There are many resources to get help. You are not ‘crazy!’ The pain is real. You may lose friends but you will gain new ones here. Love yourself. This can be a lonely road but it doesn’t have to be.”

12. “I have an advice that was very useful with my family and friends to understand my pain: Try to write down and describe your pain, I mean how does it feel. I also wrote how it tastes. Yes, because I compared it to a flavor. Once they read it, they understood.”

13. “Don’t let your illness define who you are. It’s so easy to fall back on the illness card and keep yourself from enjoying life, but you are worth it. You are enough. You may think you’re a burden on others, but those that truly love you know better.”

14. “Make a conscious effort to police your self-talk. For too many years I called myself names, cussed myself out, developed so much hatred for my own body, thinking it was a separate entity from myself that was ruining my life. The reality is your body is doing its absolute best to keep you going, and you will feel a lot more at peace with your limitations if you start congratulating yourself and thanking your body for hanging in there instead of constantly verbally abusing yourself.”

15. “Find humor in it ASAP. It’s like a parachute or wings when life pushes you to that point.”

16. “You will lose relationships, and while it will hurt tremendously, that’s OK. It isn’t your fault, it’s theirs. You deserve the people that stand by your side, not the ones that bail.”

17. “Your doctors are [tricky]. You need them. You need good ones! You need smart ones! And Dr. Google is not always right. But you may often have to push and advocate for yourself. Get second opinions. Talk to others with your illness. Learn everything you can about your disease. Stay away from pseudo-science and use real medicine and therapies to improve your symptoms. Keep notes for reference and don’t feel badly about putting your health first above the imagined feelings of office staff or clinicians.”

If you’re a “veteran” of chronic illness, what advice would you give to “newbies?” Share in the comments below.