#Sarcoidosis Tweets Are The Whiniest Tweets There Are On The Planet

There! I said it and I could care less if you are mad, offended, upset or whatever. You could call me uncaring or cold, mean or nasty, but the truth is I am so fed up with seeing twitter posts in general with the hashtag for sarcoidosis because all they are are just a bunch of depressing messages. Don’t hashtag them sarcoidosis! Hashtag those messages what they are – #depression!

I know depression is a serious thing and people with chronic illness can suffer from depression, and I am not down playing that, but let’s just call a thing a thing. I know what sarcoidosis is, I know what it does and I know people with the disease have taken the charge upon them-self to bring awareness to this disease, but from the outside looking in, if I were a person who knew nothing about the disease and I searched the hashtag sarcoidosis on twitter, I would think it was a form of depression.

Believe me, I know what it feels like to not want to get out of bed in the morning because of pure physical exhaustion. However if someone tweets “Just can’t pull myself out of bed. #sarcoidosis”, that sounds like depression to me. Another tweet I saw was a picture of a sad looking box that said “I feel sad! #sarcoidosis”. No people, that’s not sarcoidosis. That’s depression! Tell me, if someone tweeted “I broke a nail and now I am sad. #sarcoidosis”, wouldn’t that make no sense at all? It has gotten so annoying that I unfollowed a lot of people and organizations on twitter because of their misuse of the sarcoidosis hashtag.

I am not saying for people not to acknowledge their sadness but give it its correct label and stop giving sarcoidosis a confusing definition. If you want to bring awareness, do so, but put a positive twist on it. Instead of saying “Today I just want to cry! #sarcoidosis”, how about “Today my sarcoidosis pain makes me want to cry, but it is not going to keep me from living! #sarcoidosis”

The fact is, either you want to bring awareness to sarcoidosis or you want to bring awareness to yourself. Think about that for a moment and let that sink in. If you want to get sympathy then say so. Just tweet “Today I am in pain and I feel sad. I want everyone to be sympathetic towards me so I am going to let all my followers know and add the hashtag sarcoidosis so even more people can come tell me they are sorry for me! #feelsorryforme”

I know a lot of people out there don’t have support from friends and family and it’s hard and there is no other place to reach out but on social media, but hashtag it what it is – #nosupport. I recently saw an episode of “The Interview” where a prospective employee said she put #beyonce” at the end of all of her tweets even though the tweet had nothing to do with Beyoncé because that would make more people come to her twitter feed. It’s the same thing now with depression and #sarcoidosis.

People in general hate complainers, and after a while tune out what ever they are saying. So if people keep complaining and whining about their sarcoidosis, everyone is going to stop listening. Everyone knows that cancer is a painful, dreadful disease that can be fatal. Unfortunately in some cases, so is sarcoidosis, but do you see the ads on TV for cancer awareness showing a bunch of depressed people curled up in bed? No! They show people fighting. Fighting for their life and for a cure. So please stop giving this disease a life and stop it in its tracks by putting a positive spin on your own life.

Oh, and one more thing! Please stop making your tweet an entire line of hashtags!! Twitter now allows twice the amount of characters, so put your hashtags at the end!! Thanks. I’m getting off of my soap box now.

4 Comments Add yours

  1. Kate Spade says:

    I am saying Amen, to the chagrin of many sarkies. I have multi system sarcoidosis, including cardiac involvement and neuroendocrine cancer. I’ve been fighting with both going on 5 years now. I have also built an amazing network of Drs., friends and loved ones for support and to keep me grounded and focused on living as normal a life as possible. Chronic illness changes us in ways we can’t imagine until we are in the fight. We can lay down and let it defeat us, or we can stand up and fight productively, which means facing the grieving process of our old life and finding purpose, however small, in the new. One of my Drs. recently asked me how I dealt with serious illnesses at my age, 55, and that was my answer. I am an admin for a large Sarcoidosis group on Facebook and the very individuals that should be lifting one another up to gain support and knowledge are the very ones who remain in a state of anger, fear and seemingly reject the idea of positive thinking. It is like a disease of negativity that spreads like wild fire. They choose to stay in a state of victimhood, and would rather whine and complain to social media rather than educate themselves and take control where possible. Oh, there are days when I whine, I am human, however when one continues to whine and never search for a solution, whining becomes an unattractive crutch that will leave you alone faster than a fart in church. There’s so much we lose control over when we become ill, it behooves us to make the positive changes that make each day worthwhile and worth living. Sarcoidosis has tried to take my life, but instead has made me a more mindful, awake woman that has embraced life for what it is, beautiful, ugly, unfair, amazing and mine.

    #Merry Christmas and Happy New Year.

    Liked by 1 person

    1. Thanks Kate. I couldn’t have said it better myself. Merry Christmas to you and yours too!

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  2. This is an email response I received from someone and decided to share here along with my response:

    I just read your blog post and have to ask you what your point was? If it was to piss people off, you did that quite handly. If you were attempting to get people to change their way of communicating about what they are experiencing, you missed the mark. Everyone’s experience is different, and for you to judge just looks mean spirited, and Insipid. Having lost a spouse to cancer and having sarcoidosis, to imply that cancer sufferers don’t complain, whereas sarcoidosis are whiners is really a strange comparison. Trust me, neither situation is a walk in the part. Furthermore how many people do you know with an illness or disability who isn’t depressed? Perhaps a little empathy is something you might try to emulate.

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    1. My Response to the above email:

      Thanks for your email. I understand your passion but you have also missed the mark regarding the post. This post was not a generalization of all people with sarcoidosis across the globe. I was addressing a specific demographic- the sarcoidosis person that uses twitter to express their emotional feelings and mislabeling it under the general hashtag of #sarcoidosis.

      People use twitter hashtag to gain people towards their feeds, to attract followers. If they didn’t want followers or a response, they would not post on twitter but rather just follow other users and gather information.

      The use of the hashtag #sarcoidosis has now become a misuse in that most tweets with hashtag now describe people’s state of depression. Yes, people with sarcoidosis suffer from depression, but so do people with other diseases.

      “Depression and illness may occur together because the physical changes associated with the illness trigger the depression, the individual has a psychological reaction to the hardships posed by the illness, or simply as a coincidence.” (Onhealth.com)

      The symptoms described in tweet posts are caused by depression. Sarcoidosis symptoms are physical. The two things are separate. If you are describing physical symptoms, then yes, hashtag it #sarcoidosis. If you are describing sadness and other symptoms of depression, then hashtag it #depression.

      My statement regarding cancer patients not complaining is in regards to the public presentation on twitter and TV. I am sorry you lost your husband and I am sure he complained as do many other cancer patients. However, if you hashtag #cancer, the results are of people hoping for a cure. If people lists their symptoms, they list their physical symptoms. Not the depression.

      As far as my not having empathy, if I didn’t have empathy, then I would not have written the post in the first place.

      I sincerely hope that you are better soon as a person living with the disease in a chronic state for the past 11 going on 12 years, I know what it is like to have the day to day pain. However, I have found that staying positive and appreciating every day is the only way to get through the day.

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