Hi Kim,
Nicole Mackey
21

Thanks for responding Nicole.

After much cajoling from friends last night, I went out for drinks and dinner. Upon arrival I was met with taunts of “oh my gosh is that really Kim” to “we all have aches and pains we are old” etc etc. After 3 hours I was done. Getting ready to leave to I again got remarks about why I couldn’t leave, how it was early and that I am lame now etc. you get the idea. I know that this is just our typical banter and bullshitting that we do, however I had to fight the urge not to tell them all about the reasons I CAN’T do the things I use to do, even though just 2 years ago. One night of over indulgence sends me into the pit and I will pay for it for the next 2 days at a minimum. My feelings were a little hurt because I just wanted understanding, not judgement or sarcasm. I left feeling disconnected, misunderstood and alone. Feelings I am quite use to now. It sucks when you aren’t invited to events because more than likely you won’t attend. If I want to do something or just see what everyone is doing for the weekend, I have to reach out. Always! Believe me I have told most of my girlfriends to please still invite me, but I just don’t know day to day even hourly how I will feel. I’m sure they think “why invite her? She won’t come.” If they even think about me at all! Lol. I am sure they don’t understand the decisions I have to make and the reasons why. Having a chronic invisible disease is lonely. Thank goodness I have always been somewhat of a loner and I don’t mind being alone.

Thank you for letting me gripe. Question: How do you handle these type of situations? The ribbing for not being available and feelings of being misunderstood and lonely? Also, being torn as to whether to go and suffer the consequences or stay at home and take care of yourself? I don’t want to always have to explain why I just can’t do a lot of things I use too. I don’t want to be be Debbie Downer and burden anyone with all my stuff. Most of the time it just falls on deaf ears anyway.

Thank you!

Kim