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Please Remember People With Chronic Illness After the Pandemic Is Over

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During this pandemic…

Many people are taking the time and energy to make homemade bread and are trying new recipes now there isn’t much going on. But some people, like myself, have had to make healthier or harder meals for years when they had neither the time nor energy for it, constantly searching for new recipes with the right ingredients because they had to eat that way or they would cause harm to themselves or their families. I felt my choice was either to provide store-bought bread and sugary snacks and feed the evil Lyme parasites in my husband, or learn to make sourdough bread and sugar-free alternatives and maybe, just maybe help my husband feel a little bit better.

Many people are now fearful of germs and public spaces, over-utilizing hand-sanitizer and washing their hands until they are raw. Some people have always lived in constant fear of germs, having to use hand sanitizer and practice caution in any public space, because they feel they have to in order to keep themselves and their families safe.

Many people have lost their jobs, which is scary and frustrating, but they have been able to apply for an unemployment program that now has very few rules and gives out larger amounts of money more easily. The process is annoying, yes, but so is the process of being denied disability benefits repeatedly even when you have a disability. It is frustrating and scary when people with chronic illness eventually lose their jobs because they cannot work, and unemployment is not an option for them. No stimulus check came in the mail when my husband lost his job and didn’t qualify for unemployment.

Many people feel isolated and lonely, unable to attend the social gatherings and events they used to take so much joy in. But some people have been stuck at home for years, watching their friends go on with their social lives while they sit on the couch, too fatigued to imagine a world where they can join in. Some people, like my husband and myself, are relieved by the guilt of social pressure being lifted during this time, because having to say no to yet another social event is too much. Out social lives were barely affected by social distancing rules because we had already lost our social lives when we lost our health.

When it was just our problem, no one threw money at it. No one understood. We felt very tired, very scared, very frustrated, and very, very alone. Please, take a moment and reflect on the fact that if you don’t have a chronic illness or disability, this period of your life is truly that — just a period. It will not last forever. You’ll stop making sourdough bread because life will get busy, and you won’t feel crushing guilt for that decision. Someday, you will be able to go out in public and not worry about germs. You’ll be able to return to your furloughed jobs and work full time again. You’ll be able to reconnect with friends and move on together in the community. Please remember those of us who were living this reality before, during, and after this pandemic is over.

Remember what a relief it was when your income depleted or you lost your job and you got ample unemployment in addition to a check in your bank account to help make up the gap.

Remember how scary it feels to not know if you will be able to keep going to your job or if it will be taken from you.

Remember how lonely it feels to not be able to join in social gatherings and events.

Remember those of us with chronic illnesses who live in your midst.

For more on the coronavirus, check out the following stories from our community:

Originally published: May 4, 2020
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