Karen’s health conditions have not only led to hospitalizations and life-threatening circumstances, but have acted as a wedge between her and her daughter over the years. Feeling alone and that she had nowhere to turn for support, Karen shared her experience and feelings with our community.
Many Diagnoses, No Supporters
I have lupus, Sjogren’s Syndrome, Raynaud’s Phenomenon, ankylosing spondylitis, chronic kidney disease, Factor V Leiden, fibromyalgia, connective tissue disease and with all of that, I have depression. It has at times left me not wanting to live, as the pain from the illnesses is hard enough to deal with. It also leaves me with no support, no other family, and dealing with this all on my own.
The Lasting Pain of Judgment
Even 15 years later, I think of [a] comment my oldest daughter told someone: “Mom’s not sick, she’s just lazy.” [I think of that] several times a week.
Since then, due to my lupus, I was not expected to leave the hospital twice and told each time to get my matters in order. [My daughter] never visited me, feeling I was overreacting. Once she showed up at noon and I’d been dealing with a flare and still sleeping. The look she gave me and the “You’re still sleeping?” … I felt/feel that she thought I was lying and was truly lazy.
Although I worked very hard prior to getting ill and I know she saw that growing up, it made me feel extremely flawed, incomplete, bad. She was 16 [then] and I took her to the doctor with me and told the doctor what she’d said. The doctor’s response was, “Do you really think I’d prescribe the treatments and prescriptions I have for her if she truly was just lazy?” My daughter had no response to that.
At the age of 31, she also said, “I wonder if you’ve got Munchausen by proxy?” [That] just stuck the knife in further.
I feel unloved, uncared for. There’s no concern whatsoever. There are no words to express the deep feelings of pain.
Asking for Help & Understanding
I have gone to counseling for the last five years, which helps greatly with dealing with this. But since the pandemic, my counselor’s office has closed which has left me no outlet.
I try not to vent to the people around me. I’m part of a Facebook community group that I know if I really need help [with] food deliveries and such, I can ask for it. But emotionally, I’m not sure. I’ve tried other online support groups, but I’ve not found that to help.
What would really help is hugs and “It’ll be OK.” Or calls/contact from people asking me how I’m doing. Someone who truly is concerned. I feel very isolated.
The Purpose Behind Pain
Stay positive and believe in yourself (very hard to do at times). Keep getting proper medical care (also at times hard). Believe we all have a purpose, there’s a reason for all of this. Get counseling if necessary. Talk with those close to you and supply them with educational materials. And hope they all will understand.
Lake Stevens, WA
Lives with lupus, Sjogren’s Syndrome, Raynaud’s Phenomenon, ankylosing spondylitis, chronic kidney disease, Factor V Leiden, fibromyalgia, connective tissue disease, depression
Sometimes those closest to us can be the most insensitive. If you’ve experienced this yourself, consider sharing the story.