Things I keep rebuying: chronic illness hospitalization edition, all under $35!!!
Hospitals are supposed to be where you go when things get bad. But during my most recent hospital stay… I was reminded that thinking simply does NOT apply when you have a chronic illness.
7 weeks after my last IVIG (far too late, thanks insurance… not), after travel, stress, and weather fluctuations, I flared hard and fast with pain that honestly felt like it came straight from Satan’s living room (the indicator that I’m flaring).
My doctor and I decided it was time to go to the ER to get my symptoms under control and to get IVIG. Unfortunately, one of her partners was rounding. And that provider refused to treat the symptoms of my flare, stating he was only comfortable giving me IVIG and that my home regimen should suffice (which took me ~10 hours to even get).
But what stuck with me most wasn’t just the pain he left me sitting in, but what he said:
• Hospitals aren’t for chronic illness patients… the infrastructure isn’t built for us. • Surgeons send people home in 10/10 pain, so the goal can NOT be for me to leave with less pain (yes… I asked for less pain, not no pain). • There were “more serious cases” in the building and this had taken up too much of everyone’s time. • And if he believed my pain was handled, it was. It didn’t matter I was pleading for help.
Although some statements might hold a kernel of truth, the implication was clear, chronic illness patients are less important and our reported symptoms are NOT to be trusted. The most disheartening part? This perspective was cosigned by both the system’s Chief Medical Officer and department leadership.
And THAT makes this all even more devastating, since 1 in 3 people live with chronic illness, and many of us have acute periods that absolutely require hospital care. This system has to change. Chronic illness patients deserve relief and dignity just like any other patient.
But until that happens, I had to share the few things that made this stay an INCH of a bit more tolerable… so DM me if you’d like links or codes, and comment something you’d add!
#chronicillness #autoimmune #invisibleillness #fyp #medicaltrauma
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Managing chronic illness in a hospital setting is uniquely challenging, and having the right personal care items can truly make a difference. During my recent hospital stay, I learned that the harsh, dry, and often noisy environment can exacerbate symptoms and add layers of discomfort beyond the illness itself. For example, frequent hand sanitizer use left my hands cracked and raw, so a rich yet non-greasy hand cream designed to repair the skin barrier became indispensable. Hospital air can be shockingly drying, making lip care equally critical to avoid painful chap lips. Having a facial spray with soothing ingredients like hypochlorous acid helped calm irritated skin and reduce redness caused by stress and constant mask wearing. Since chronic illness hospital stays often mean irregular sleep due to bright lights and constant noise, investing in comfortable eye masks and soft noise-blocking earplugs (designed to not hurt your ears even when sleeping on your side) helped me get much-needed rest. When hydration was tough due to nausea or IV treatments, electrolyte drops turned plain water into a recovery aid, helping me feel less awful internally. Pain is always a major concern in these situations. While medical staff may not always acknowledge or adequately address it, topical CBD gels offered a supplemental way to ease muscle and joint pain during long waits for care. And when showering isn’t an option, gentle yet effective face and body wipes were a real lifesaver to feel clean without aggravating sensitive skin. Ultimately, the system isn’t fully designed around the needs of chronic illness patients, but these small, budget-friendly investments ease some of the invisible burdens hospital stays impose. Sharing this list with fellow patients and advocates can empower us all to demand better care while coping more comfortably in the meantime.
I was told the same thing about emergency rooms not being built to deal with things like "this" and their "info structure" 🥺