living with lupus, day by day, moment by moment

“It changes you.”

Oddly enough, the two people who are most involved in my progress are none other than my rheumatologist and my disability case worker.  Who knew that in my mid-thirties, my closest relationships would be with these two people.

How did this come about?  Well, my immediate family, since they live it with me, no longer asks about my condition.  Outside of that, I have lost touch with most people I knew before the disease activity plucked me out of society and plunged me into my new (solitary) lupus life.  Others, I have very limited social interactions with and they have no idea what my life is like.

So it’s funny that my confidants have become these two unlikely professionals.  I am hoping to add a third person, a much needed therapist to the list, but until then, these two people have been my therapists.  They have been there from the start of my disease activity, through the worst times and its ups and downs during my “recovery.”  As a primary doctor and as a case worker, they have checked in regularly to see the progress of my disease.

The other day, I was talking to my case worker and a question came up on whether I have been able to get out and socializes. Whether I have been able to have visitors to break away from the solitude, and whether it might not be a good idea to do so as the winter months were approaching us.

I imagine she wast just being polite but I took the bait and poured my heart out.  I guess I sort of needed to verbalize what has been inside of me for a long time.

All of my relationships have changed, most not for good, including my relationship with my immediate family, my extended family, my best friends, my friends, my acquaintances, my co-workers, and frankly, even my dog.  Lupus has touched all.

To sort out what happened to each of my relationships will probably require individualized assessment.  While lupus was a dominating force in the change, the change did not happen in a vacuum but in the context of pre-existing relationship.  How to go about bridging the gap in these relationships pre -and post- lupus will take time.  Lots of time.

I feel like I have been burned, left behind, uncared for, misunderstood, and/or forgotten.

But most importantly, I feel like I no longer care.  I can no longer relate to most people and therefore, no longer care for their company.  After all, how can I talk about shoes with a girlfriend when I cannot wear heels because of my nerve damage and it is difficult enough to walk in comfy flats.  How can I relate to someone with career problems when I have not been able to work for over three years.  How can I enjoy a night out when I can barely make it through a meal. The list goes on. . . .

When I explained this to my case worker, I realized that not only have I taken up her time, but I must have sounded weird. Her response, however, surprised me.  She explained to me that what I have gone through, well, these experiences, it changes you.

She shared with me her personal traumas and how it changed her.

I always believed that people didn’t really change.  Through time, we got better or worse, but our core remained the same.  But I do believe that I have changed.

My entire life, I long craved company.  It always seemed like anything worth doing was made more enjoyable by sharing the experience.  This is what fundamentally changed within me.  I no longer need or want company.  I truly enjoy solitude and every relationship seems like a burden.  This is mostly due to two things; it is physically difficult to engage in social interactions and it is nearly impossible for me to relate to most people.

I know it’s not healthy. But I am not healthy.

I have a small nugget of relationships that I have preserved, cultivated or resuscitated. As I nurture these relationships, I do hope that I will be able to add more.  Almost as important as repairing old relationships is how to forge new ones.  As the relationships will be different, it will be interesting to see how things develop in the future.  I am, however, in no rush.

It Changes You . . . !

                                                                  It Changes You . . . !

2 thoughts on “Relationships

  1. That Girl says:

    I so know what you mean!! Lupus absolutely changed me. I think for the better. Mostly LOL! I do know that I can pretty much only hang out with other autoimmunes anymore. Nobody else really gets it.


    1. @ThatGirl It is absolutely true. It’s gets a little lonely but good to connect with others who understand!


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