By contributing writer, Marisa Powers
As many people with Lupus know, your life changes dramatically when you begin having symptoms – even the medications can wreak havoc on your lifestyle. But your friendships seem to be one of the first things affected when you have any chronic illness.
There was a time when I used to be the “fun” friend. I would go to bars and concerts, spending time out with my friends on a regular basis. Even after having my child, it was a priority to me to be a good friend. I was the one that you could put a few drinks into and I would make everyone laugh. I really didn’t care what people thought of me, nor did I feel the need to criticize or judge on my part either.
There were a few times that my friends had something going on with their health and I was always understanding. You see, I am the one that people open up to and I seem to have a gravitational pull to people with a need to talk about what’s bothering them.
I was the go-to reliable person.
So when I was showing symptoms of Lupus, I didn’t quite catch on to the reality that I was going to have a great change in my life. Many symptoms began including fatigue, muscle and joint pain, and in my case regulation problems with my body temperature. I went to a concert a month after my diagnosis and paid terribly for two days afterward. I couldn’t handle the heat or what drinking alcohol did to my body the day after, when I couldn’t get out of bed and could hardly walk. I figured it was isolated and still acted like the “old me”.
I would be invited to gatherings, show up, and again pay the consequences. I would sit there trying to keep a smile on my face but deep down inside, I was hurting. I can’t stand for long periods of time and I can’t sit either. I would get very uncomfortable pretty quickly. I kept telling myself that I can handle it, but always proved myself wrong. The next day I would wake up crying from the pain, and the fact that I was not who I once was.
My husband would warn me that I would end up hurting myself, and the stubborn independent person I am would hurt myself in order to try and prove him wrong. I began to see that I couldn’t handle it.
I didn’t have control over my body anymore.
When Lupus Gives You a Bad Rap…
I am now losing friends because I am that “bad friend”. I have pushed away people because I am afraid of hurting them by not following through. One friend deleted me entirely out of her life because I was too sick to follow up with her daily when she was going through a health scare. I know it was quite selfish of her, but if I was well enough I probably could have been that friend she needed. That really made the reality of it all set in.
I have a really hard time telling people “no” and I don’t want to be that person that is not involved. I was not coming to the reality that I am not who I was before Lupus. People don’t see me as dependable now and that really hurts.
They see me as a dropout.
I am now the one that is unreliable at work because I call off so often. I am asked to do things, and when I remind people that I may not make it, I hear the sarcasm in their voice when they say “Ok, let me know.”. Lately, I made a new friend and had to back out of her wedding. Not because I wanted to, but because my body decided to attack itself the week of the event and I couldn’t shake it.
I am forever grateful that she looks past it, but for how long?
The Importance of Continued Connection
Lately, my best friend has noticed that it isn’t really my fault. At first, I could tell she was resentful and would stop inviting me. Over time, she started seeing that although I cannot be there, inviting me to the events still included me and kept our connection alive. I am so grateful that she looked past it all and kept in touch.
So I carry on and continue to keep in contact with the people I love. I hope that they see that I’m really not that “bad friend”, I just have a bad disease that makes me not as dependable as I would like to be. I remind them that I still care about them and our relationships, even if I may not be able to participate in every event. Lupus may have control over many things in my life, but it doesn’t have to have control over the people I love and care about.
Marisa Powers was diagnosed with Systemic Lupus Erythematosus in 2016 at the age of 35 after a major flare trigger by the birth of her child. Since then she has become an advocate with the Lupus Foundation of America and the US Pain Association to try to inform others of chronic illness and chronic pain issues. While living with Systematic Lupus, Fibromyalgia, Anxiety and Panic Attacks, Hypothyroidism, and Reynauds Syndrome, she has written for The Mighty talking about everyday issues with being a survivor and now is a contributor for Lupus Chick. You can read her other articles at TheMighty.com/u/marisa-powers-1.
4 Comments on When Lupus Undeservingly Labels You “The Bad Friend”
Sad but true!
Oh my goodness, everything I’ve been feeling the last several years but could not put into words. Thank you.
Hi Marissa, I cried reading your story because the ‘old you’ is the old me’ and therefore I totally relate to the changes you are going through since being diagnosed. My social butterfly life is long gone. It is such a struggle to accept and make inner changes to accept it. Keep strong warrior, we are in this together. Maureen
I too had friend that felt i was alway cancellingon her. But with m. I can be well one minute 30 min later like blood been dained from me. And i see you have temp.issues. i hate it happens but glad it has my last cew md.visits i was starting my symptoms in front ofmy doctor. Severe fatgue, hot sensation, profuse sweating, and nausea and about to vomit. My souse siad this what happens any time.out of the blue. My rountine primary care i was already in cycle 3 hours vomiting,severe fatigue,heat and cold sensation .jioint hurts. I told her i glad now you all can see what iam going thru. I have excellent bp .but it was 150/90 and swollen 10 pounds .i told her it feels like my body sjas a short circut and when it flips evwrything goes haywire..i put trust in GOD i will get better.hope you too—zola