Tooele Transcript Bulletin – News in Tooele, Utah

February 11, 2021
What those with autoimmune diseases want others to know

A few years ago, I was diagnosed with an autoimmune disease, ulcerative colitis. 

I won’t go into details, but this disease can be debilitating and causes many issues within my body that I was not previously aware of. To put it simply, my immune system doesn’t like me very much, I guess.

I have made my amends with this disease and my crappy immune system and learned how to deal with everything that comes with it in the few short years that I have had it. Although, there is still more to learn, I think I have a pretty good grasp on this thing. 

Even though I have a pretty good understanding about what triggers periods of “flare ups” that result in numerous issues, I realized that many people don’t.

I hear stories from individuals who are in support groups with me that their families and friends don’t understand these diseases and come up with their own “myths” or “speculations” about these diseases. With 23.5 million, or just over seven percent of the United States population suffering from autoimmune diseases, there are a lot of incorrect myths and speculations being thrown about.

So, I have decided it was time to debunk all of these false ideas. I decided that my first step was to interview a few individuals who had these diseases and ask them, “What do you want those close to you to know about your autoimmune disease?” as well as come up with what I would like to tell others.

First, we want those around us to know that we are going to have bad days. These days may include anything from being slower, or less productive than usual, all the way to not being able to get out of bed. These bad days are random and we cannot control them. But, we also have good days.

 Holly, who has Crohn’s disease, ulcerative colitis, and rheumatoid arthritis said, “I know I ‘never feel well’ but I don’t need you to point that out. Just be supportive on my many, many hard days but make note of my few good days!”

The second thing that I would like to point out is oftentimes we do not look sick on the outside but we are really suffering on the inside. Oftentimes, with many other types of diseases, the individual will look very sick and that is how people know they aren’t feeling well. But with many autoimmune diseases, the individual suffering doesn’t look sick at all. 

I would like to say, and I am sure if you have an autoimmune disease you will agree, that we have learned how to hide this simple fact.

Nirmala, who suffers from an autoimmune disease said, “There’s constant physical pain. It almost never ends but we suck it up and peddle through leaving everyone to think we are okay.”

“Invisible illnesses may not be visible to you but we are battling,” said Misty who has four autoimmune diseases.

Third, many mental health problems accompany these diseases, such as anxiety, depression, and PTSD. For example, some of those who deal with autoimmune diseases have survived a particularly traumatic experience in the hospital or just by the hands of their disease alone. Just because they hide it, doesn’t mean it isn’t there. Please be gentle with them.

I have been fortunate enough to have family and friends that I can talk to about these issues that come along with my colitis, but I can definitely say that I have suffered some anxiety, sadness, and upset from the symptoms of my disease.

Alieen, a mother, said she has seen the mental health side effects that accompany her son’s disease.

“You have no idea the depression this disease creates,” she said. “As a mother, there isn’t anything I can do to take this awful disease away from my child.”

The next thing I would like to tell you is that sometimes weight loss or gain accompany these diseases. Please try not to make unnecessary assumptions or point this out. We do not have an eating disorder and we aren’t on drugs. 

Marissa, who suffers with Crohn’s said, “I want to let people know that sometimes I fluctuate in size. My clothes don’t fit the same and I can go between four sizes in a month! No, I am not on drugs. Thanks for asking.” 

The final thing that I want to tell you is that oftentimes individuals dealing with autoimmune diseases receive no help when they are suffering. 

I have talked to so many people who say that when they are having a bad day, they receive no help from others close to them. We don’t want sympathy but sometimes we need help completing everyday tasks or just need some support. We don’t want you to point out how sick we are or anything negative, we just want you to recognize when we are slacking and need some assistance.

I want to end on a positive note, because I don’t want to put the impression out there that autoimmune diseases ruin our lives or we want to complain. I can testify that my disease has actually been sort of a blessing in my life. I have realized how strong I am and I can appreciate the good days now. I used to take feeling healthy for granted and now I don’t.

If you are related to or friends with someone who has an autoimmune disease and you listen and try to help them the best you can, I want to say thank you. 

I would especially like to thank my husband and dad for listening and advocating for me when I was too weak or timid to do so myself. Relatives and friends who support us are rockstars and we are so thankful for you!

 

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