Social Media

As a blogger every time I press the publish button or write a piece of work I know that it will invariably invoke some sort of reaction from the reader. I can never be sure what that reaction will be but I can decide how much credence I give it.

Putting yourself out there will always mean you are also subject to who is out there. Whether they are friend or foe, they will have open access to read and comment about your work and your life. The only thing that can vary will be how much I engage with others comments and how much I let it mean to me.

My soul reason for taking up blogging was to add a voice, and hopefully some context, to the awful misconception and lack of information regarding autoimmune diseases and chronic illnesses around today. There was so much patient shaming and disrespect out there that I thought the balance needed to be redressed. Although I write openly about my own experiences it is my hope that people will realize that it is ok for us to come out and speak up about how we feel and what we experience and that we are not social pariahs the world would like to believe.

So much misinformation and prejudice existed a decade ago, and still does, that it was my sincere hope that some education and sharing could help make a difference. I still hope this. I couldn’t do what I do without believing in this fundamental belief. So I keep on writing and I keep on hoping.

I never cared about who liked my writing or how many followers I had but I felt truly touched when someone felt a connection or a sense of empathy when they read something that they related to.

I notice today that there are growing numbers of people out there who are also coming out and sharing their stories. It is incredibly satisfying to see. Sufferers seem to be realizing that their difficulties and their challenges need not make them feel unwanted and invalidated in this perfection obsessed world.

When I first started speaking out I was truly shocked my the number of people who would say, “oh wow! My (insert name) has an autoimmune disease too,” or “I have battled lupus for years now…”. It was amazing to connect with so many others that it was no longer important to me who didn’t like me or who was trying to devalue me or my experiences. I felt released. I still do.

No find today that I am no longer dependent on the judgements and validations of the world at large, my voice has given me strength and my strength has given me more voice.

However, the downside to speaking out about anything these days is the number of people who will retaliate. It has become clear that expressing an opinion today or sharing a view is a dangerous thing to do and it seems like everyone (whether they know you or not) can (and will) feel entitled to fire back. It surprises me and disappointments me greatly because without open and respectful discussion no civilization has ever grown or flourished. Ancient Greeks recognized the need for their people to have a voice and the need for their people to think.

Since when did having an opinion or voice become such a blood sport?

The fact is that without sharing our thoughts and experiences, and feeling able to do so, we never learn. We never get to hear other sides of a story. We never get to see a bigger picture. Regardless of whether we are right or wrong.

I have many friendships and rewarding relationships with people that I couldn’t be more different from if I tried but I still enjoy their friendships nonetheless. Furthermore I don’t always have to be right all the time, I believe that I just have to be me and this is what I value from others. Authenticity.

But these days you it feels as though we can’t speak, write, post or show anything about yourself without someone trying to besmirch you or your entire being! I am also aware there is a social phenomena called virtue signaling where people feel better about themselves by holding themselves out to be more virtuous and better than someone else!

It has become unacceptable in society today for someone to disagree with you without trying to attack your entire character or worth. Why? The need to be right all the time, to be the best, to be special or to feel superior to others only causes more social problems than it could possibly solve.

It has even become common place for anger and vitriol to erupt in our personal spaces with people feeling it is necessary to become angry mobs rather than exercise respect and dignity. I am deeply saddened by this.

Whenever I write something I now know that someone will 1. Like it. 2. Hate it 3. Agree with it. 4. Ignore it. 5. Troll what I have written… and every other possible variation. None of this, however, alters the fact that I am writing about my own personal experience and my life and I am entitled to do so. I am no better or no worse than anyone else.

Although after years of living my life and fighting these illnesses it would be wonderful if people read my work and felt like maybe they understand a little more but I can never guarantee that this will happen. I can never predict or expect that something positive will come as a result but I can only hope.

I don’t ever write for the purpose that I will garner sympathy or popularity for myself because my life and my personal value exists completely independently of such things. I have found value in myself first and foremost and I also encourage all those with chronic illness to spend every ability and every ounce of energy you have in doing this. It is by far the most important thing that we can ever do during our life with illness! More important than medications or anything else because the fact is that we have to value ourselves or nothing we ever do will be worth it. Nothing.

This is essentially why I continue to write what I write and do what I do, regardless of what people have said or will say. I believe I have the right to think, believe and develop as I go through this life, My life, and I am not afraid to be wrong or to learn from my mistakes along the way. I have only ever been afraid of losing the desire to keep fighting my fights and finding no meaning in being the person I am today.

This is how and why Autoimmunitygirl came into being but from this little blog site I also became a stronger and more complete me.

Gentle hugs,


2 thoughts on “Social Media

  1. I have never cared who likes or dislikes what I write. It is always fun to write something people like and comments make me happy. But just as much as I like great comments I do not care one wit about negative ones. I write about my life because it helps me process things. If people like it great, if not great. No matter I write for my benefit, and hopefully others are helped, but if not well that is cool as well.

    I mean unless it is Sheryl of course I am scared of her.


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