bloggingchronic illness

Dealing with Negative Feedback

I have shared many times about all of the wonderful things I have been able to experience thanks to being a part of social media and an online health community. Despite all of the perks, there have definitely been moments of frustration in dealing with negative feedback and behavior. I have been very blessed here at A New Kind of Normal not to have anything like this happen (because you all are the BEST!) but I have seen my share over the years. I have seen message board “wars” and fights within support groups over who is right. I have also seen that the “mean girl” mentality is still equally present in adulthood.

I think we can all recognize that conflict is inevitable and whenever you are dealing with a group of people with different personalities and perspectives, there are going to be moments of disagreement. I think it is in the moments of disagreement that people’s true colors shine through. I am not opposed to discussion and even healthy debate but when belittling and personal attacks begin, a line has been crossed. Don’t get me started on how my views of people changed during the election process as I watched hate and ignorance take over social media.

When faced with some of this negativity, I avoid it when possible as I don’t have spare energy it takes to get dragged into it. I am not shy about using the hide button or unfollowing if necessary. When you deal with chronic illness, you need to decide what is worth your energy and what isn’t. Negativity spewed across cyberspace is an area where I choose not to spend my energy unless two things are happening: 1) I am a leader in the community and therefore have a responsibility to manage it, or 2) there is an injustice that needs to be corrected in which taking a stand is required (such as grossly inaccurate facts about adoption)  in which case I do my best to share correct information with the understanding that it may or may not change the other person’s mind or behavior.

As a community leader, I have followed a couple of guidelines to help get through some of the tougher situations. First, know the community rules and be sure those rules are posted somewhere so that you can refer members to when necessary. One group I helped lead was a closed group and as a part of being approved for membership, you had to sign off that you read and agreed to the rules of membership which outlined the type of behavior that would not be tolerated (such as personal attacks, bad language, etc). This group also had a required confidentiality agreement which prohibited contacting someone off-list without prior approval (doing so could result in legal action) so it could prevent any disagreement from being extended off-list but as a leader, it was important to be sure to reinforce these boundaries and take action when they have been violated.

I think something else to consider when dealing with negativity within the community as a leader or as a participant is that to not take it personally. I know this can be difficult (and I am preaching to the choir here because I have a lot of difficulty with this whether it be online or in the workplace or otherwise) but I have learned that in most cases the issue at hand is not about the recipient at all. Generally, the aggressor (or troll in some cases) has some sort issue with themselves and they are choosing to act it out on someone else. This person may have a mean girl complex and finds some twisted sort of high self-esteem from tearing others down and finds the internet an easy target. This person may just be a jerk and have nothing better to do than troll websites looking to start trouble for the “fun” of it. This person may live under a rock and not have a single clue what manners are. It may be a combination of all three. I think taking a moment to step back and consider that the conflict or negativity is not really about you is a great way to gain some perspective when dealing with negativity and conflict within the community.

These are just a couple of things that I have learned over the last few years being a part of the online community. Have you ever dealt with negative feedback or conflict within the community? What advice do you have to give on overcoming the negativity?

chronic illness

Chronic Illness Survival Kits


The prompt for Day 9 of National Health Blog Post Month included preparing care packages and I have written several posts creating different types of survival kits so I thought I would share them!

1- Bowel Prep Survival Kit – If you ever had to prepare for a colonoscopy, you may want to check out this post! Because of my celiac disease, I have to have yearly EGDs (which are a much easier prep!) but I still have to have routine colonoscopies and I have had to perform bowel preps for surgery so I have survived my share of preps.

2- Surgery Survival Kit – Six surgeries in eight years has turned me into quite an expert so I have gathered some of my favorite items that I recommend to include in creating a care kit if you have a friend or loved one preparing for surgery or is in the hospital!

3- Flare Survival Kit – I asked on Facebook what fellow spoonies included in their “flare survival kits” that made getting through a flare a little more tolerable and this is the list of responses! I definitely got some great ideas of things to keep on hand to allow myself to be a little more comfortable the next time a flare rolls around!

If you had to create a “chronic illness survival kit,” what would you include?

chronic illness

A Letter To My Health

Dear Chronic Illness,

You and I have had a rocky relationship the last nine years. I have cried out “my body hates me” more times than I would like to admit as there have been moments consumed with defeat and betrayal. Everything I thought my body was supposed to do seemed to fail. I lost my ability to conceive and carry a child at the age of 26. I spent my first three wedding anniversaries recovering from surgery. My joints can no longer support my love of running and the open road. Every trip and event has to be planned to factor in distance, walking, fatigue from travel, are there gluten-free options, yada, yada, yada. Spontaneous is no longer a part of my vocabulary. I feel like I have lost so much.


I have also gained.

My faith has been strengthened. I have learned what it means to have hope, faith in the things unseen. Even when I feel that God is silent and wonder what His plan is, I know in my heart of hearts that I believe that He is working and He is in control.

I have learned so many lessons from my illness and that I am so much stronger than I could have ever imagined. I am a fighter and refuse to give up, even though I have had to face reality of a new normal.  While life had taken me down I road that I never would have imagined, I am learning to be confident in who I’ve become in spite of it.

I have learned first-hand the depth of the promise my husband and I made on our wedding day. I am so lucky to be married to my best friend who I feel compliments me so perfectly and I truly feel he was created specifically for me and to walk with me through this. It has not been easy and I won’t pretend that illness has not brought its share of challenges into our marriage but we are committed to each other 100 percent and the vows that we made before God and our family and I think that helps us get through those hard days.

I have also met so many amazing people that I would not have otherwise had the chance to meet. I am blessed to have several ladies in my life who have gone from acquaintances to friends to dear sweet sisters.  When I started this blog, I never imaged that anyone would ever read it much less how lucky I would be to build relationships with so many amazing readers. The online support community I have been able to be a part of has really helped me stay positive, learn about my illnesses and feel empowered, and really grow as a person.

So, chronic illness, you have taken a lot from me but I have gained so very much in return and being able to list out all of the many blessings I have received as a result make everything worth it. You may have broken me but you have not defeated me.

I will not give up.

Sincerely, Me.