Life with Lupus: Straight from the heart

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This is Catherine. You may have noticed that’s she’s been writing a weekly column on the blog. I love empowering women and find that writing can be a huge tool in that. Catherine has been a friend for the past four years. Lately, she and her family have had some trying times. Furthermore, she’s been suffering from lupus for about 12 years now. I initially interviewed her for one of my weekly Q&A’s (Catherine’s triumphs over lupus and homelessness) a few months ago. In said Q&A, she mentioned that lupus is often seen as the invisible disease because all the pain is internal. On the outside, no one would know Catherine is sick. Furthermore, when Catherine is out and about, she has a smile on her face. Since lupus is invisible, I invited her to make it a little un-invisible through this weekly column. This one is one of her most honest ones yet. 

 

By Catherine Daniels

I have lupus and I’m homeless. It’s been a long road my family and I have had to travel, but I believe had we not been together as a family, it would have been a lot worse. The stress of homelessness has made dealing with lupus even worse.

When my family and I first became homeless, we would have never thought we would live this way. So you ask what it meant to be homeless? My vision of homelessness consisted of a person who stood at the exit of the highway with a sign saying ” homeless and hungry. Please help me!” Seeing that person always made me mad. Somehow that was the face of homelessness and it was inexcusable! Why would they let themselves go like that? I was exactly the person that judged a book by its cover. But I could not be more wrong.

The faces changed as we became the homeless. I was embarrassed, humiliated and ashamed. Not just because of our situation but because I allowed myself and my family to be judged by others. When the faces of homelessness took on the reflection in the mirror, I noticed others differently. Now I see a family with children and pets. People living day to day trying to survive.

We lived in a minivan for the first two weeks and it was hell. We were washing up in the bathrooms at McDonald’s and using their free wi-fi as a means of communication with available services.  It was like living in a bad dream. The stress was overwhelming and it took my lupus to an all-time low. The stress of being homeless broke my stress levels through the roof and it almost took me out. My husband and son tried to make things as comfortable as possible, though. We were grateful for our friends as they rallied together to help us afford a stay at a motel. We were able to at least stop living in the van.

When you have lupus, anything that affects the nervous system can turn a headache into a full on seizure. I tried to stay calm but it was hard when you did not know where your next meal would come from, or whether or not you would have a roof over your head the next day. Being homeless is exhausting. It seems like every ounce of strength you have is spilled just thinking of ways to get out. While my husband looked for work, my son and I, and our two little dogs stayed behind at the motel waiting.

When we were able to get out of homelessness, we found shelter for a few weeks at a very good friend’s apartment. All of the support from friends was priceless. With my husband being a veteran, we were able get help from SSVF (Supportive Services for Veteran Families) and we were saved for a year. We lived in a very nice home in a beautiful community, but unbeknownst to us we were not out of the woods. It just goes to show you that you should always have a plan B. We were not prepared for what came next. Trusting the people who were there to help was a mistake. The assistance we thought we were going to get ran its course without our knowledge and it put us back on the homeless path. I can honestly say our resources were better the second time around, although it was just as stressful we learned how to adapt.

My personal way of dealing with the stress was to take my medicine, hoping it would dull my pain inside and out. I did not have a way to contribute to getting us out while my husband looked for work and running errands for people in exchange for money. Everyday I worried about if he was desperate enough to do the unspeakable. Fortunately it did not come to that, but worried me just the same. I wondered how people thought of him and what people thought of our son. For a long time my medicine was my escape from my reality.

So that brought us to the current day. Most days I am so tired I can’t get out of the bed. Other days a short walk with the dogs turned into hours of endless pain. My heart breaks when I think of how I used to judge others who were homeless. How could I have been so judgmental? Never again. You never really know a person’s circumstances, so never judge a book by its cover.

 

 

 

 

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