Navigating life with an autoimmune disease is far from straightforward. There is no cure or “one-size-fits-all” treatment, and most people spend years experimenting with various medications, therapies and lifestyle changes to find a combination that helps manage their symptoms. Even if someone is able to find the “perfect” combination through trial and error, maintaining that balance day to day is another matter entirely.
On Friday, actress Jameela Jamil shared a photo on Instagram encapsulating the difficulty and frustration of trying to manage an autoimmune disease.
“Living with an auto immune condition is a real pain in the arse, and it irrationally makes you feel like a failure for not being able to ‘live it up’ like other ‘normal’ people,” Jamil wrote in the text over the photo. She added in her caption:
This. Shit. Is. Hard. ❤️ and shout out if you are so fucking tired of having to protect yourself in a bubble while so many other people are able to just eat what they want, take drugs, stay out all night, drink a lot, take risks, do sports…. etc. But you make one less than perfect choice and your day/week is ruined. The envy is real… I see you. I hear you. I feel you. I’m with you.
Oftentimes, people with autoimmune diseases or other chronic conditions find they feel best when they stick to a certain routine. These folks likely know which foods they should eat, how much sleep they should get and how much activity they can manage on any given day in order to keep their symptoms at a minimum. But as Jamil pointed out in her post, this can be exhausting.
Even if you do everything “right,” autoimmune diseases are unpredictable. Sometimes even the tiniest change from your usual routine can cause your condition to flare up. Sometimes, it may flare up for seemingly no reason at all. During these moments, it’s easy to feel like a “failure” — as if your choices are the reason for your flare-up, and the reason you are sick. That is simply not true.
It can also feel unfair to have to give so much consideration to every decision, every small part of your daily routine than the average healthy person. Whereas staying up an hour later might not be a big deal for most, it could have major consequences for a person with autoimmune issues. In her essay, “Why I’m Envious of Healthy People,” Mighty contributor Kathleen Nicholls explained why it’s easy to feel jealous:
When I eventually became seriously ill, priorities and my life changed almost overnight. Suddenly mere survival eclipsed any frivolous life of fun I might have planned for the coming months and years ahead.
But now, living with chronic illness on a daily basis, life is vastly different. My conditions need to be factored into my every move. That doesn’t allow for a massive amount of freedom, as you can imagine… So, when I think of outsiders who don’t live with health issues, I feel a tad envious and it’s difficult not to.
One of her followers asked which disease she has. Jamil confirmed the autoimmune disease she has is Hashimoto’s thyroiditis in the comments of her Instagram post. She wrote in response, “Hashimotos. I also have EDS 3 which isn’t auto immune, it’s just an arsehole.”
Hashimoto’s thyroiditis is an autoimmune disorder in which the immune system attacks the thyroid gland, causing hypothyroidism (underactive thyroid disease). When the thyroid is underactive, it doesn’t produce enough thyroid hormone, slowing the body’s processes and metabolism and resulting in symptoms such as weight gain, depression and fatigue.
Since confirming her Ehlers-Danlos syndrome (EDS) diagnosis in February, Jamil has not shied away from talking about how her multiple chronic conditions affect her. “The Good Place” actress recently joked about her “bendy” limbs (a result of joint hypermobility, a common EDS symptom), and opened up about the scarring and stretch marks she has due to Ehlers-Danlos and eczema.
Managing the ups and downs of an autoimmune disease can be exhausting — and it can be tough to face consequences with your health others don’t have to worry about.
For anyone fighting through the daily grind of autoimmune issues, Jamil wrote: “Shout out to all of us who struggle with this, and go through all of the incredibly shitty days, and make it through each one. Even if it’s just by the skin of our teeth. We are LEGENDS for our strength of character.”
To read more about autoimmune disease, check out the following stories from our Mighty community:
- 12 Myths About Autoimmune Disease That Make It Even Harder to Live With
- The 5 Necessary Components of My Flare-Up ‘Tool Kit’
- How the Fluctuating Nature of My Autoimmune Disease Taught Me to Be Grateful
- When You Do Everything ‘Right,’ but Chronic Illness Strikes Anyway
- 26 Photos That Show How Autoimmune Disease Affects the Skin