One of the hardest issues I’ve had to deal with lupus is not a bodily one. It’s a emotional, soul, and spirit of the heart issue. The innate nature of humankind is to seek out companionship. When I am blessed to find others out there that make me smile, laugh, or really be able to be open and real, then I’ve made a friend. With each friendship or even dating (before I was married), making set plans to spend time with each other is expected. I love seeing my friends! My personal life is so boring and sometimes restrictive that a trip to the grocery store is a planned outing. And the energy spent at the store is enough for the whole day. The challenge of coping with lupus symptoms includes unexpected, unwelcome bad days which can just throw any plans completely off course.
Some people just can’t tolerate that, and it upsets them. It also upsets me, because it is my body’s needs I’m respecting. It’s not personal, planned out, rude or even calculated. It’s not even irresponsible, (dare I say it.) I look forward to the plan for a visit just as much; it’s always so refreshing to see a friend. My friends warm up my awkward and shy heart. 
During these years passing by, I watch my friendships unravel only to experience heartbreak, over again. As my illness has progressed over the years, I’ve lost friends from my childhood and teen years. I’ve lost more recently established friendships. My protective layer or guard is drawn up a bit more each time. Experience of rejection is not a pleasant and glad one. Chronic illness also means that I am lonely oftentimes.
Years before I met my husband, a former flame actually officially broke up with me because of my unpredictability to keep plans. It’s affected my family life and dynamics. In the past few years, my grandma has been hospitalized. My grandpa is a Alzheimer’s patient and needs companionship. My immediate family called for me to help watch him when needed. I couldn’t confidently confirm that I could be there every day. My family turned on me for the faux pas of telling the truth. If I could be somewhere on a regular committed basis, I’d be working like most other people in the prime of their life! They were passive aggressive about it. The last thing in the world I want is a one way ticket to rejection island. (Or a family feud.) And I have been on that trip more than once. Then my dear husband comes to my rescue and rows me back to the shore of our lives.
What chronic illnesses steals from me is the best person I can be daily. I want to be present and active in the world. Instead, I have a reality check about myself. I am limited, yet not derailed. This moment by moment experience includes even the most cherished or important plans being broken. Having to adjust to each thing as the moments pass by is just part of the trial. I only have faith that my challenges have purpose and meaning. That I might be able to do with this good for others would be lovely.
I take comfort from the same promise Jesus has given all of us. There is grace given to me sufficient for only one day. Each day I need to recharge my grace battery and build up my faith in Gods love. I pray each and everyday for the grace of my loving Heavenly Father to get through each day.
******* below is an article from lupus.org on social activities and lupus patients.
Around three quarters of people with lupus say the disease limits their ability to participate in social activities, according to a survey conducted by the Lupus Foundation of America. In May, we asked our followers on Facebook how their friends could better support them in maintaining a social life while living with lupus. In honor of National Friendship Day, we’re sharing some of your advice:
1. “Just simply accept that we have good days, bad days and then there are the really bad days.” – Karrie Mendonca Wood
2. “Please, don’t stop inviting us to things. We may have to say no or pull out at the 11th hour, but we would still love to spend time with you.” – Jude Brennan-Ward
3. “Understand that some days are better than others. Be patient and don’t take it personally if I need to change or cancel plans. I want to do everything, but I have to listen to my body, and sometimes that means rest.” – Cammi Buttner Clara
4. “Come to my house to hang out instead of making me get dressed and drive over to your house. I feel more comfortable in my own home and have all my meds, heating pad, etc at home.” – Nicole Tellor
5. “My friends come over in PJ’s and we have ‘bed picnics’ and watch movies! It’s beautiful.” – Amber Coffee
6. “Understanding is the greatest and simplest way to better support me.” – Patty Gomez
7. “Instead of saying, “call me if you need something,’ offer specific help. Say, ‘I’m coming over Monday night at 6:00, and I can do some of your laundry while we eat take out and watch a movie. Ok?’” – Jonella Williamson
8. “Be patient, supportive and understanding. Love me through the bad days, even when I can’t get out of bed or do anything. Be there for me when I just need someone to talk to or I just need someone to sit with me.” – Vicky Shriber
Sweetie Designs 