Thread by @shivani_chdhry

For most people, getting Covid was a disruption that passed. But for the millions who developed #LongCovid, that disruption has been persistent – for years.

After 32 months of living with this complex chronic illness, here are some reflections...🧵

1. The belief that if you fall ill, the healthcare system will help you recover – doesn't hold true for people with complex or invisible illnesses.
Dismissal, mistreatment, and denial of health insurance are often the norm.

2. In the absence of adequate support systems, the burden of survival, of searching for treatments, and of advocating for cures lies mostly with patients of complex illness. This is most unfair.

3. Diseases are non-hierarchical but false narratives of hierarchy in the medical system have led to the inexplicable neglect of chronic illnesses like Myalgic Encephalomyelitis (#MEcfs) & #LongLyme

4. Discrimination on the basis of illness & disability is unethical but rampant.

5. To make the *human right to health* a reality, it's important to ensure that no one is left behind and no illness is left unresearched and uncured. *Medical gaslighting* should be considered a human rights violation.

6. *Medical injustice* is real. While the world is blessed with some amazing doctors, many care more about their egos than patients' well-being.
The Hippocratic Oath seems to be dying. Even then, *do no harm* is a basic principle of medicine that includes saying, 'I don't know.'

7. Severe chronic illness is a slippery space between recovery and death, biology and biomarkers, hope and despair; between irony and paradox. It robs you of spontaneity but also of the ability to plan. It makes you simultaneously long for life’s miracles and death’s relief.

8. Chronic illness distorts the notion of time. Life moves both in slow motion and fast-forward mode. Days are painfully slow, but months speed by. We're immobile, but our bodies change rapidly. We’re stuck in a tedious time loop while the world races ahead.

9. Complex chronic illness has layers of inexpressible agony and loss. It steals so much from us: Time; sleep; simple pleasures of life; careers, income, independence; freedom to do/eat what we want; the ability to work, travel, attend family events, and be there for loved ones.

10. For the chronically ill, surviving is herculean. When abled people say, 'be strong,' they don't realize the inordinate amount of strength it takes us to make it through each day and night, to stay alive.

11. *Ableism* has become a major blight of our times, even among the allegedly progressive. Often, it's so internalized that people don't even recognize it in themselves. Ableism is discriminatory and damaging; it hurts and harms millions. It needs to end.

12. The loss of human life can never be condoned by the term *underlying comorbidity*. And the death of medically vulnerable people cannot be treated as the *collateral damage* of society's *normality*.
All lives matter and must be protected.

13. Human worth is perceived by employers as *productivity* and by society as *utility*. When you're chronically ill or disabled and can't contribute as expected—whether in jobs or in relationships—you're discarded. Such abandonment of people when they most need support is cruel.

14. The return to a delusional *normal*—under the guise of *economic growth*—could prove to be not only socially calamitous but also economically catastrophic.

15. Denial doesn’t end a pandemic. The price of such *ostrich-ization* is being paid by millions – with their lives and livelihoods, their health and homes.

16. Chronic illness gifts you with *super-powered glasses* to see through relationships and sift the genuine from the superficial.
Incredulously, there's an inverse relationship between the duration of illness and the number of people who care.

17. Living with a multi-symptomatic chronic illness teaches us that nothing, nothing is in our control except the decision to embrace hope: The hope of recovery, a cure, a new life… Hope is all we have, so we cling to it, even in the darkest hours of despair.

18. Much of what we think is important in life, really isn't. If I could go back to my pre-Covid life, I'd work less, take more holidays, dance harder, walk farther, listen more to my body, and spend way more time with loved ones, especially the youngest and oldest.

19. The growing acceptance of *patient-led research* and the recognition of *patients as experts* in their illness will be transformational for the future of medicine and healthcare.
@patientled

20. Twitter, for all its flaws, is a lifeline for people with chronic illness and disability. This community has helped me survive; given me advice that doctors couldn't, information that Google couldn’t, and understanding that friends couldn't. I'm so grateful. 🩵

Gratitude 🩷 to all the amazing advocates, doctors, #pwLC, #pwME:
@PutrinoLab @zalaly
@ahandvanish @loscharlos @WesElyMD
@doctorasadkhan
@elisaperego78 @drclairetaylor @VirusesImmunity
@LauraMiers @resiapretorius @BinitaKane @luckytran
@myrabatchelder
@Dakota_150
@exceedhergrasp1

Thank you 💙
@CordeliaAppleb1
@j_b_kennedy @maosbot
@ShaneyWright @RaviHVJ
@gezmedinger @dbkell @Daltmann10 @GeoEduOne
@calirunnerdoc
@cocobelladoodl @useless_priest @IpLongCovid @MeetJess @ELHopkins @meghanor @organichemusic
@pamelarbishop
@1goodtern @thane_black
@fahimzia20171

Thank you 💛
@TheSunshineVit1
@DrEricDing @farid__jalali
@Dr2NisreenAlwan
@MVGutierrezMD
@girish_lc @souryadash @priyakamal @himmatb15
@rebslogan @ItsAngInLA
@fi_lowenstein
@HarryLeeming
@Carrie_McGinn @MelanieWeckert
@Naomi_D_Harvey
@thephysicsgirl
@SarahLerner @cocobelladoodle

Deeply grateful for the invaluable resources & support 💜
@LongCOVIDPhysio
@LongCovidSOS
@SessionsTlc
@itsbodypolitic
@long_covid @MEActNet
@LCawarenessInt
@LongCOVIDnetwk
@LongCovidKids
@Not_Recovered
@Dysautonomia
@longcovidpod @longhaulhope
@actionforme @LongCOVIDAllian