In a world that increasingly encourages personality traits like extroversion and spontaneity and promotes bodies that are fit and healthy, having a chronic physical or psychiatric condition can be isolating. SheKnows spoke with women about what we learn about other people when we’re so often unwell with chronic conditions.
Everyone has advice for you (some more helpful than others)
“A lot of people will just tell you to be positive and to stop thinking about it,” says Elysha, 34. “People can be a bit judgmental when it comes to understanding things like fatigue, mistaking it for laziness. Not everyone is very understanding, but the majority are. Sometimes people will ask me what endometriosis is or send me articles in relation to it.”
Not everyone understands
“In my last job as a nanny I had to have time off some months and eventually lost my job due to being unreliable,” says Helen, 36. “My employer, the mother, didn’t understand at all, and my confidence dropped a lot from losing my job. I am incredibly lucky though as my boyfriend is very understanding and supportive, and really tries to understand when I’m in so much pain. My parents are also very empathetic.”
You learn who your real friends are
“I’ve lost contact with friends because they got fed up with me canceling plans,” says Hazel, 35. “In general I have found having a chronic illness helps determine who your real friends are. The people I love pendulate constantly between showing empathy and understanding and being annoyed and frustrated with me. I think this is because of my moodiness and my inability to do stuff I used to do.”
Elysha has experienced similar difficulties: “A lot of people I know just stopped meeting me and wouldn’t want to discuss further. Perhaps it is because they feel like we are ‘moaning,’ but really we just want them to understand why we cannot keep up a social life.”
People can be dismissive of “women’s problems”
“As a woman in my 20s, I have missed out on so many social occasions because of my endometriosis,” says Kirstie, 25. “There have been weeks when I haven’t been able to eat solid food, and the vomiting and bleeding has made me feel too dizzy and weak to leave the house. I’ve missed birthday parties and meetups because my period started and I’ve ended up in [the ER]. I have always found that talking about my endometriosis is difficult; people view it as ‘women’s problems’ and are reluctant to talk about it. It sometimes feels impossible saying that you were up all night vomiting, and passing blood clots and bleeding through your clothes and fainting from the pain. I’d rather say I caught a cold, or that I have a bad back.”
You realize everyone has their own problems
“Living with a chronic condition, irrespective of whether it’s physical or psychiatric, can be isolating,” says Ida, 29. “Opening up about my own struggles was actually comforting for others who also feel isolated, as much as it was comforting for myself. When I told people about my chronic condition, friends I always assumed to be happy and healthy suddenly came to me, confidentially, to share their own struggles. I learned one friend was having counseling, and another had been getting physiotherapy for years for a problem that wouldn’t go away. We’re all fighting our own battles silently. Sometimes it’s good to share.”
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