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One of the Most Important Moments With Chronic Illness

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Something that most people don’t know until they experience long-term illness is how much your life becomes filled with waiting. Waiting for appointments, waiting for call backs and referrals, waiting for a test and then the test report, waiting for answers, a diagnosis, treatment, only to realize a lot of those situations will result in more waiting, further testing and more appointments.

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I’m sure I’m not the only chronic illnesser who has been met with family and friends having frustration or confusion when you don’t have an update for them (or news that you are cured, but that’s for another article). I’ve just recently recognized how I internalized this because obviously if they feel that way, how do I feel about it? Disappointment doesn’t even begin to describe all the emotions.

What I started thinking about was this ridiculous set of expectations I put on myself to not only have some type of news for others, and also that what I was going through only mattered if I had a diagnosis or surgery scheduled. In reality, the waiting is the most difficult, especially the unknown. Is this serious? Are there treatment or medicines to take? Is it rare? Will I need additional specialists?

I then had an epiphany that it really isn’t my fault I have all these thoughts or feelings, because society normalizes this. Think about the responses those of us who have pain or symptoms experience.

“Oh, I’ve had that (or some aunt or other person they know) and it was just _____.”

“You can’t worry until you see the doctor or get your test back.”

“You are going to feel really silly when it’s no big deal.”

Insert more gaslighting phrases…

What’s just as awful, or honestly can do more damage is when a doctor does it. So if that’s what we get to hear, how do we talk to ourselves or what does it do to our inner dialogue? I can tell you what’s been mine the last few months.

“You don’t have a right to cry, you don’t know anything for sure yet.”

“You are going to regret sharing about the appointment or imaging with anyone when the doctor says it’s normal. Then they are really going to think you exaggerate and want attention.”

“If you research about this, you are just going to work yourself up and I bet it’s only an incidental finding.”

I’ve been having so much guilt and shame for being terrified even though I am having appropriate emotions and reactions to imaging reports. I have to admit it took my therapist telling me that everything I was feeling was understandable, healthy, and actually needed. That was when I recalled prior situations and realized because I would tuck away any insecurities that weren’t positive or hopeful, it would always catch up to me sometime and of course need to be worked through and healed from (even a few I’m still healing from).

This time I thought, what if I do it differently? What if I allow myself to feel it all, good, bad, and hard? What if I stop surrounding myself with the people who won’t support or allow me to say my fears or admit the real feelings? What if I listen to podcasts and songs/lyrics that talk about that very thing and don’t try to skip the uncomfortable?  What if I show my daughters that it’s alright to be human and break down? That we can have an OK day followed by a terrible day or up and down moments throughout the day?

I’m still navigating this new perspective and trust me, I know I’ll have to keep at it and have times I mess up because it’s so against the grain and how I’ve handled previous health hardships. The reason I am writing this is because I want to normalize a person feeling scared or nervous about the future while in the waiting, not just after diagnosis or surgery. Because for most, answers don’t come immediately. Even after diagnosis and surgery, there’s waiting to see if the medicine works or if there’s improvement after recovery.

For me, it took over 20 years for my first correct diagnosis and I unfortunately thought when I’d get those answers, it would mean I could finally fix whatever it is and move on to live my life. Unfortunately when you learn you have a progressive and incurable illness, you become a little resentful. That’s why we can’t only listen to the toxic positivity people who believe everything will always turn out OK. Are they the ones who have to live with the reality if it doesn’t? Or who have to adapt, cope, and advocate to continue living their life?

I know with the holidays, a lot of us are preparing for those conversations and how to answer in those tough moments when we feel the pressure to make light of the waiting. I want you to know that the in between is when we suffer the most. I hope that we can give ourselves kindness and grace, even when others don’t, but also find the people and safe communities that do and will.

Originally published: December 20, 2022
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