It’s hard to be the patient.
It’s also hard to be the family member or the person watching their loved one suffer. A person without the disease naturally wants to help or fix. But more times than not, there is no fixing — just supporting and understanding. I believe normalizing the conversation of mental health awareness for the chronically ill will help direct people and society to a place of better knowledge and understanding. Helping family members or caretakers understand the mental space of the patient helps everyone involved and leads to a relationship of trust and gratitude.
As patients, we are prolific in describing with great — and sometimes uncomfortable — detail the symptoms and ailments we feel.
Sharing these same details with the ones closest to us is important, but each following conversation doesn’t need to lead with the “what’s wrongs,” instead of the “what’s rights.” It can feel depleting, especially if it’s already been explained.
My health struggles are a big part of me, but they don’t define me. Wanting to control the narrative is important to prevent being viewed with a distorted lens.
When so many of the thoughts dwelling inside your head revolve around your health and the problems it contributes to your life, it can feel frustrating to be forced into discussing these issues, especially if they’ve been explained before.
It is very supportive when our loved ones listen and remember the details that become our norm, so that when discussed another time at the patient’s discretion, there is no wasted energy describing and explaining again.
It is no fault of the loved one in any way and it’s never malicious, but in my 38 years of living with cystic fibrosis, I’ve come to realize what feels supportive and what I feel sensitive about. I am extremely lucky to have the most amazing family who is physically and emotionally there for me no matter what, and each day I feel gratitude for all my loved ones who help shoulder the burden of this terrible disease along with me. I also know that just because I live and breathe all things that go along with CF, not everyone in my tribe does, no matter how much they care and want to be available. I hope I can convey to people the many different ways to help, and that — more often than not — the smallest gesture of support is often the biggest.
For my entire life I have spoken the cystic fibrosis and medical language. I am fluent in medication names, procedure names, test names, doctors’ names, side effects, symptoms, daily obstacles, protocols, and problems.
But just because I am bi-lingual in English and illness, should I expect my closest support system to have learned the terminology as well?
In my opinion, the answer is mostly yes. Let me explain.
Medications and symptoms play a starring role. They are the protagonists of the patient’s medical story. Having to reintroduce them more than a couple times feels draining and redundant. The repetitious parts of disease shouldn’t need reintroduction, and in doing so, it can feel exhausting and makes one wonder why they are repeating themselves.
In no way do I expect my circle to remember the name of a new medication I’ve just begun taking after barely discussing it. And I would never think they should know all the details regarding the new, hard-to-understand problem that just spiraled out of nowhere, especially as I am learning to understand it as well. But I think it shows real support to know and remember the common names, symptoms, causes, and reasons of why we take what we take and do what we do.
I can speak from experience that having a support system that remembers the common names or knows what you’re referring to when discussing the disease that commands so much of you is some of the best support of all.
CF is painfully hard. The mental aspect of CF is also painfully hard. Having to repeat known facts or issues to the people closest to you is just as hard as the aforementioned and can feel disappointing. I don’t want to sound ungrateful because nothing could be further from the truth; but I want to raise awareness and advocate for how it can feel for the chronically ill besides simply saying, “I’m sick.”
Understandably, everyone has moments of forgetfulness, but if there is an unwillingness to remember or learn, that can feel sad or lonely. Applying the effort needed to remember these things will mean so much. Although each person and the context of each scenario might be different, the best thing you can do is listen, learn, and wait for your loved one with CF to share. They will share when they’re ready and your knowledge will help ease their suffering even more.
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