I had a really hard time when I was first diagnosed with chronic illness. It came after years of mental illness, and I was angry, depressed, and scared. I had no idea that it was possible to have a good life while being sick or in pain, but slowly I found a life I could love. These are some things that helped me get there
Focus on things that make you happy now. Many people assume that they can’t have a good time until they are better Even if you have hope for improvement or recovery, don’t wait to get better to create a life that you enjoy. Make a list of things that you enjoy doing (or have never done but might enjoy) that you can do now, with your current abilities. Make a list of things that you find meaningful and can do now. Make a list of ways you can connect with people, now. Make a point to do these things. It might look different than it did before, but I promise it’s possible.
Keep an open mind about the future. None of the things I value most would have happened if I hadn’t gotten sick. My relationship with my family, the friends I have met through it, these blogs, my current job. When I first got sick all I saw were losses. I never could have imagined all the positive things that have come out of this. No matter whether you return to a certain level of ability or not, I promise you that your life can be worth living. Even if you can’t imagine what that might look like, try to find hope that it’s possible.
Remember that healthy is not normal. I understand why many people with chronic illness refer to healthy people this way, but there are as many paths in life as there are people. This type of thinking is isolating, it emphasizes loss, and it can prevent you from seeing new opportunities that might arise. Chronic illness can become your normal, and that’s not a bad thing. Embracing it as my normal helped me create a life that works for me instead of squeezing into old plans that no longer fit. Hank Green’s “new normal” video was a big inspiration to me, and I highly recommend watching it.
Limit the amount of time you spend thinking about the “old you.”Don’t search for proof that things were better or different before. For example, looking through a friend’s Facebook photos and thinking about all the things you can’t do, constantly saying/thinking things like “last year I was doing x, y, and z, and now I can’t,” or ruminating over what you thought your life would be like and measuring how it’s fallen short. It’s perfectly normal to be sad about this, and there is nothing wrong with that, but spending excessive time dwelling on the past is like picking at an emotional scab. Eventually you need to give yourself a chance to heal.
If your friends or family talks about your illness this way, or equates healthy with normal ask them to stop. This includes saying things like “I want my daughter back” or “I can’t wait until this is over and things are back to normal.” Your family did not lose you just because you got sick! You are alive, and you can have an awesome life even you are sick and/or disabled.
Separate physical illness and emotions. When I first got sick, I just assumed that being sick meant being sad. But that’s not true. The more you separate the two, the easier it will be. It helps me to think of my symptoms as a message from my body to my brain. Nothing more, nothing less. Once i was able to separate the physical from the emotional, my mood improved so much! In fact the past two years have been the sickest and the happiest of my life.
Connect with others who understand what you’re going through.Talking to others who are going through the same thing as I am has been so helpful. It gave me people who could relate and understand the problems I face, even just understand the language I use. It gave me people who I can hang out with, without feeling different or not being able to keep up. And I found role models, people who were living and thriving. Who found coping skills that worked and were happy to share.
Finally, treat yourself like your best friend. Be sympathetic to your suffering. Tell yourself soothing things. Remind yourself this is not your fault. Give yourself little pep talks. It’s totally normal to go through a grieving process after being diagnosed with chronic illness. Treat yourself the way you would treat any other grieving person, with understanding & kindness. Don’t be angry or sad that you are angry or sad. Practice assuming your body does not hate you, and see how that feels. Treat your body with kindness, and focus on self care
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