Things I Wish I Knew Before Chronic Illness

While the unpredictable nature of chronic illness keeps you from having a perfectly clear idea of the future, I think these things would have been incredibly helpful to know at the beginning of my journey.

  1. You’ll probably have side effects

Every time I start a new med my doctors don’t usually go over all the side effects, if any. They usually tell you the alarming ones that would be cause of an emergency, but other side effects can be very alarming. For example weight gain or lose is a side effect of SO SO many meds; weight gain especially. Read up on every med you take and know both the short term and long term side effects.

2. The journey to a diagnosis may be long

For some chronic illnesses it’s pretty straight forward as far as diagnosing, especially if there’s diagnostic evidence to prove something is wrong. I’ve been searching for five years and still don’t have a main diagnosis. It’s a grueling process for some and definitely as easy as I thought it would be.

3. People are going to say stupid things… very stupid things

Some where along the way rather it’s a friend, family member, or stranger, people are gonna say stupid stuff. They’ll tell you to lose/gain weight, drink water, exercise, cut out artificial sweetener, go gluten free, try yoga, the list goes on and on. A lot of these things you’ll hear again and again, maybe you’ll even try them out of desperation. People will question your illness especially if it’s invisible, and tell you to just try harder even when you’re at your breaking point.

4. Pain meds aren’t always a magic fix

Tylenol will become a joke to you very soon after the beginning of chronic pain. Despite popular belief narcotics won’t take away all the pain, in fact for some people they may not help at all. If you find a pain med that works for you it can greatly improve your quality of life but that may not happen.

5. You’ll flare

Some days you’ll feel on top of the world and the next day you’ll feel like you’re dying. Flares can last a few days, or weeks, or even months. When getting out of a flare it can feel like you’re “better” and it’s easy to have a false sense of hope. Enjoy and be grateful for the times you feel well but don’t be too naïve about what it means. You’ll flare again but that doesn’t mean you should have fun while you’re feeling good.

 

What are some things you wish you knew before chronic illness?

Lots of Love,

Alyssa

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2 thoughts on “Things I Wish I Knew Before Chronic Illness

  1. I wish I knew the impact it would have on my life. For the first year I hung tough and stayed the course with my life and didn’t let it change me. But after awhile I realized I couldn’t do that anymore. When I began grad school…it was all out of control and something had to give. I had to quit my jobs and slowdown… not just slowdown a little though. Like slam on the breaks and stop doing everything except going to grad school I wish I had known so I could have tried to prepare myself for it. It’s traumatic.

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