Living with an Autoimmune Disease – how does feels?

Having lived with psoriasis which is an autoimmune disease for the last 36 years of my life and with the gluten intolerance for the last 4 years of my life, one might imagine that it becomes normal or that one get used to it. It never becomes normal. And one will never ever get used to it. It consumes your life, it dominates your days, hours and minutes and everything you do is driven by it.

There are more than 50 million Americans living with an autoimmune disease, and 75% are women, according to the American Autoimmune Related Diseases Association. Some of the more than 100 identified autoimmune diseases include myositis, lupus, rheumatoid arthritis, and Crohn’s disease.

Living with a ‘disease”:

Yes, we are living with a disease. You can see it on the surface… eczema scars, psoriasis lesions, legs covered with psoriasis and arms covered with itchy flaking spots. They  can turn angry red when you are stressed or relaxed. Or you had too much too drink or had an engaging conversation with a friend. Yes, there is no answer on WHY this happens, no answer on when the flare up occurs, no answer and no cure…..

Living with a disease that no-one sees and they think that you are whining:

Yes, no one sees Crohn’s or Ulcerative Colitis or Celiac or Lupus… no one sees it and thus it is between your ears. It may very well be, since we do not know the cause of all of these highly inflammatory diseases and no one really knows how to cure them.

The symptoms are usually just ‘managed” and the response is suppressed…

Emotional Trauma:

Feelings of a very low self-esteem, deep sadness, and even depression are commonly experienced by people living with autoimmune disease. Look up various and multiple facebook groups where people try to find a common connection and exchange thoughts and experiences about their disease.

There is no cure …yet

There is no cure…yet. We manage with diets, steroids, some oral and other super expensive therapies that only a few can afford. We manage our lives by sharing with others and usually hiding the ‘imperfections’ and avoiding the ‘triggers”….

Look everyday in the mirror and tell yourself that you are worth it and you are beautiful :

Yes, there is no cure, there is no explanation, yes, you are different. But you know, all of us are different. This makes us unique. My little and very often big psoriasis flares make me who I am and when I am ‘clean’. I do not even recognize myself and take that day or a week as a gift, as something that I cherish and enjoy. And then, knowing that this is not forever, I prepare myself for another flare up and become even more connected to who I am and an even stronger human being.

I embrace my clear days and my flare-up days and my usual days with just a part of my body covered up and that’s ok! I wake up every morning and if my psoriasis is not itchy, it is good day and if I don’t feel sick, it is an amazing day.

Putting things into perspective:

This year, 2020, this year of COVID and pandemic, has put so many things into a perspective.  As I wake up, I remind myself to do a little prayer and be thankful for all the other amazing things in life. Psoriasis, eczema, gluten-allergy do not define me but they are a little part of me that is so very beautiful!

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