Are you tired, fatigued, or exhausted? What’s the difference?
In the rare disease community, the distinction is important
Everyone gets tired sometimes. Some of us, especially when we push ourselves, become fatigued. And especially with rare diseases, many of us truly understand exhaustion.
In today’s vernacular filled with sarcasm, we frequently hear people, even children, say, “I’m exhausted!” While the words are interchangeable according to Merriam-Webster, terms used by the professional medical community are different.
There are actual definitions of fatigue in medical terminology, and they may vary from one medical condition to another. Then there are the different systems of the body that are also affected.
Are the symptoms affecting you physically, mentally, emotionally, cognitively, motivationally, or in some other way? How can these symptoms be measured? Isn’t it all subjective? These are all part of the challenges we face when conveying our symptoms to doctors, much less unpacking the cause.
For me, another issue is which of my multiple diagnoses might be the culprit that’s causing my fatigue. Is it my chronic Lyme disease, Ehlers-Danlos syndrome, mast cell activation syndrome, hereditary angioedema, or long COVID-19? Does it really matter? Most importantly, what can be done about it?
Not much really, other than listening to my body and resting.
One thing for certain is that we can’t just power through it! We start every day living with rare disease, so having this level of extreme tiredness is a major signal to stop and take care of ourselves.
I try to avoid triggers, watch what I eat, take dietary supplements, exercise, and practice self-care and mindfulness, especially during a flare that causes multiple symptoms, including tiredness.
It’s also crucially important to have support systems in place. For me, that’s my husband, daughter, and cats, as well as my rabbi and family therapist. I also really enjoy being a part of multiple online communities. And it’s great that I can work from home.
For those of you who also experience serious fatigue with your illness and are employed, make sure to reach out to your human resources department to disclose what you feel comfortable with about your situation and request accommodation.
Also, make sure you ask your doctor what they advise to get you through those difficult days dealing with your rare disease.
Hang in there and know that you are not alone!
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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