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Why I Felt Even More Isolated After a Recent Chronic Illness Flare

I have been chronically ill since I was a little girl. And even though I had my challenges as a child living with chronic illness, I was still able to engage in activities with my peers and live a somewhat “normal” life. I went to birthday parties, sleepovers, trips and did plenty of things, except when I had active infections, or asthma attacks or had to have procedures done. As time went on, I managed my conditions and life was fine.

When I was diagnosed with endometriosis in my 20s, it was the first chronic illness that surely put pause in my life and made me alter how I did things and engaged with friends and family. And over time, as the diagnoses kept coming, my life and my body continued to change and my ability to engage in activities did as well. Over time, friends stopped asking me to go out or to attend events and it began to get to me. But I eventually expressed to them that even though I have my challenges, I can still do things, I just have to adjust how I operate. And I began to make it to things on my terms and felt great until recently.

In March of 2021 I experienced a severe lupus flare that changed my life in many ways. Leading up to this, I had not been taking care of myself, not enforcing my boundaries and my body had suffered the consequences. Over a four month period I had had several kidney infections, a severe migraine in addition to my normal migraines, a ruptured cyst and an upper respiratory infection. I had also had one infection that was resistant to antibiotics and it took quite a bit of time to get rid of it. We believed that all of this contributed to this flare and because of this, my body went into a very fragile state. For about two months I was very tired and weak and in these moments I realized that I needed to rest and I had pushed my body too far. I needed the time to heal, and during this time, my friends and family realized just what I was going through and pushed me to stop and rest and recover. For the first time ever I didn’t have to explain that I have debilitating chronic conditions and my body was unwell. The world got it. However, this also came at a consequence.

Let me explain. In the beginning, there was lots of care and concern from folks due to just how serious things were and how awful I looked and sounded. This is common because humans feel this innate feeling to care and want to say “hey, I showed concern” when something isn’t right. This is great. Well as the days passed I either got one of two reactions: lessened concern from folks or consistent hovering like I was unable to do for myself or that I needed to take great care and concern with. The lessened concern I am used to because, well humans are humans and only allot themselves so much care for any given situation, which is fine. But the super care and kid glove situation has made me feel more isolated than my normal feelings and I must say, I don’t like it. I am used to the normal not being invited to things or not being told about certain things, but being patronized or told I can’t do something is an even worse feeling.

I have always been autonomous and done things for myself, so when this latest flare up happened I was not OK with being brought to a complete halt. I needed help and I eventually became OK with that. However, as I began to heal and resume my day-to-day tasks of life, it was almost as if those in my life didn’t understand that I was healing. I want human interaction, I want to go out and do things. It is OK if I do things, my doctors have said it is OK, as long as I feel up to it! And if I have to pause or leave early or cancel, that is OK! This is a process but at some point we have to remove the kid gloves and trust that I will be OK. Yes, my chronic illnesses will still be here, but I have overcome this obstacle, just as I have many others in my life. Will I need help sometimes? Sure, but I also can manage things on my own, which is a blessing.

So what is the moral of all of this? Just because someone with chronic illnesses has challenges doesn’t mean that they need to be pushed aside. We may have moments of difficulty, but that doesn’t make us any less of a person. When we feel good or after we overcome a significant health event, it makes us feel even better when we can participate in activities, even if it is something as small as grabbing a coffee or something as large as seeing a new art exhibit.

Getty image by XiXinXing