When It Feels Like You're Starting Over With Chronic Illness

“Don’t be afraid to start over. This time you’re not starting from scratch, you’re starting from experience.” — Unknown

This quote has been everything to me lately. I’ve been sick for the past six weeks, and I don’t know if it’s a flare-up of other chronic illnesses or if it’s something new. But it’s been reminding me of things that I thought I was long past.

It has reminded me of the fear of not knowing what will happen next. Being terrified that my body will never recover. Not knowing what new symptoms I’ll start experiencing next, or how they’ll affect my life.

It brings back memories of endless doctors’ appointments. The unclear lab results. The disappointment when tests come back normal. The being dismissed by doctors, until suddenly they call you in a panic when things are more serious than they realized. Long wait times to see specialists who often didn’t have any answers. Endless tests that come back with inconclusive results. Being sent to the ER for mentioning certain symptoms. The new medications with different side effects every time.

It’s terrifying to think that my illness might have come back. Last time I felt like it destroyed my life. It took away everything I considered my identity: my school, my hobbies, my friends. It took me two years to be able to work again, even part-time. It took me even longer to learn to trust my body again.

I wasn’t sure how I could go through that again. The depth of depression it caused. Am I strong enough to go through that again? I don’t know. Managing not just the physical symptoms, but the fear and other emotions, and working with doctors to get answers. How can I do it all again?  I’m also balancing a lot more in my life right now than I was last time it happened, will this all fall apart? Will the life I’ve struggled to rebuild come crashing down again?

Last time, I was relatively near my hometown, near the doctors. But this time I’m halfway across the country. I’ve had to find new doctors for everything. In a small town, there are not the specialists I worked with before, the doctors who specialize in my conditions and teach at the country’s best medical schools. But what I do know is this. I’m not starting over. I am starting from experience. I am afraid, but I can use what I learned last time to help. These are the things I’m doing now, my non-negotiables:

• I am only working with doctors who respect me and listen to me. I don’t care if they have all the qualifications in the world, or if they’ve literally written books on my condition. If they don’t even act like they care about me, it’s not worth my time.
• I am finding doctors who will advocate for me. Last time I didn’t have a good primary care provider, so every doctor sent me to different ones, in an endless cycle of referrals. Now, I have an excellent PCP, but he’s halfway across the country and can’t even treat me virtually due to licensing restrictions. But I saw a few different doctors at my school’s health center, and the one I trusted I have made my new PCP.
• I am preparing for appointments. I get nervous when I meet new doctors, and in the past, that has resulted in me barely saying anything, which means I just leave the appointment frustrated by the lack of answers. This time, I’m making a plan before each new doctor I see, with an overview of symptoms, more detailed description of symptoms specific to them, questions for them, and a medication list. That way, when I walk into the appointment, I know exactly what I need to say before I leave.
• I am getting accommodations from work and school. Last time I didn’t do this, and when I approached my professors they were not accommodating. However, after I went through the formal accommodations process they were very helpful and supportive.
• I’m asking for support when I need it from my friends and family. Last time, I was ashamed to ask for help, and I felt like I was always being too lazy. Now, I know that the people I need in my life will help and support me, and I’m not dealing with people who can’t.
• I’m being nice to myself. Last time, I judged myself constantly. Anytime I couldn’t do something I had previously agreed to do, I felt guilty. When I couldn’t finish things I used to be able to do, I felt broken and lazy. This time, I’m sure I will still feel those same feelings. But I will try not to judge myself for them. Because it isn’t easy being sick, and I am doing my best.
• I’m prioritizing my health. Instead of doing everything I can to stay on top of work and school, I am putting my health first. I am taking time to cook nutritious meals. I’m exercising when I can. I’m resting when I need to.

It can be so scary to feel like you’re starting a chronic illness journey, whether it’s for the first time or the 15th time. If you’ve been through this before, what have you learned from your experience? Even when it feels impossible, you will get through this. I hope you’re able to find the support and help you need to make it easier for you.