Why "Simple" Medical Procedures Aren't Simple with Chronic Illness

When the dentist told me I needed all four wisdom teeth removed, I wasn't thinking about the surgery itself. I was thinking about everything that had to happen before I could even sit in the chair and everything that might happen after I left it.

The staff at the dental practice were wonderful. They told me the entire process, from check-in to check-out, would only be an hour. Only an hour. What they didn't know was that preparing for that one-hour procedure would take days, nor could they see the anxiety of wondering how my body would handle the recovery.

While my recent experience was with oral surgery, these concerns are common for people living with chronic illness and apply to all types of procedures. 

Most people think, “I have oral surgery on Wednesday. I need to pick up soft foods and arrange to have someone drive me.” They might need to take a couple of days off of work. Maybe they need to make arrangements for their children’s care. For most people, that’s pretty much it. 

Not for me. I think about:

• How am I going to make it through the night without drinking water? I already wake several times every night just to stay hydrated.

• Will I have to stop any of my medications? If so, will that trigger a flare?

• How will anesthesia affect my body?

• Eating and drinking are already difficult. What happens when my mouth is healing, too?

• Will I need additional mobility aids?

• Will someone be able to stay with me if recovery is harder than expected?

Days before the procedure I start preparing:

• I clean the house because I know I won't have the energy afterward.

• Laundry gets done.

• Groceries get bought.

• Prescriptions are filled.

• Medical appointments get rearranged.

• I try to bank every ounce of energy I can because I know I'll need it later.

People try to reassure me. "You'll be feeling better in a couple of days."

I know they're trying to help.

But they're talking about the average patient.

My body has never been average.

Recovery doesn't happen in isolation:

• Inflammation lingers.

• Pain can trigger other conditions.

• Lack of sleep compounds fatigue.

• Struggling to eat and drink affects everything else my body is already trying to manage.

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Anxiety. It’s always present, but amps up in these situations. How will my body handle this?

• Will it trigger a flare?

• How many days or weeks will I lose to recovery?  

• Can my body handle one more thing at this time?

Then, of course, there’s the financial impact. I already struggle with daily living so being prepared for the struggle to be greater is important. I spent almost $300 on items suggested to help with increased difficulties I’d have for days, or longer, after the procedure. 

After insurance, my cost was about $2500. That doesn’t go towards my medical deductible. Most of my medical expenses don’t. Healthcare costs aren't just the procedure. They're everything surrounding it.

The biggest thing is not knowing how my body will react and doing my best to anticipate needs beforehand. It’s exhausting to an already exhausted body and mind. 

With medical procedures and chronic illness, the hardest part isn't the procedure. It's preparing for every possible outcome because experience has taught me that my body rarely follows the "normal recovery timeline." I've learned to prepare this way because I've been caught off guard too many times before. When your body is unpredictable, planning isn't overreacting, it's survival.

So, when someone tells me, 'It's just oral surgery,' I know they're trying to reassure me. 

They're seeing one hour in a dental chair. They're not seeing the week of planning, the hundreds of dollars in supplies, the medications, the anxiety, the rearranged schedules, the flare I'm hoping doesn't come, or the recovery that may last much longer than expected.

For people living with chronic illness, the procedure is often the easiest part.

It's everything around it that wears us down.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities.