Blurry Boundaries & Unsolicited Advice
I’ve been hesitant to talk about Her Chronic Wellness with most of my friends/loved ones because it takes so much vulnerability to share these stories with you. I’m not a huge fan of opening myself up to unsolicited advice, and while I cherish conversations that offer support and thoughtful insight, I’ve noticed that the boundaries between a respectful discussion and an unwelcome opinion can quickly become blurry.
When I began sharing pieces of my chronic journey, I was given a lot of advice on how to talk about it, how much to share, and who I should and shouldn’t discuss it with. Limb Girdle Muscular Dystrophy 2B is rare, so it requires awareness for any hope of research or a cure. When I am told how I should censor the small parts of myself that I’ve built up the courage to share, this is how it sounds:
What they say: “I just feel like this is a very private thing to go through.”
What I hear: “Even if it helped lead to a cure, is it really worth it if it changes how people see you?”
What they say: “I think you should be careful how you talk about it to your partners. You wouldn’t want to scare them away.”
What I hear: “No partner will want you if they know what you’re truly struggling with.”
What they say: “Don’t tell your employer about it. You won’t get hired. And if you do, you could lose your job later.”
What I hear: “No one wants to hire you because you don’t have value with that condition.”
What they say: “Cheer up. So many people have it way worse than you.”
What I hear: ”Your suffering does not deserve to be validated or acknowledged because others are suffering too.”
These types of statements are toxic, yucky, and untrue. They hinge on the notion that chronic individuals hold less value because of their impairments, so those impairments should be hidden from others, AND that other people “having it worse” means that chronic individuals are not allowed to suffer.
The truth is:
A true partner will love you for all that you are and all that you struggle with. They will support you in your lowest lows, and they will take care of you when you’re in a flare-up. And if they don’t, then they’re not your person. See my earlier post: Not Exactly the Sexiest of Dinner Topics.
There is some serious fear-mongering surrounding the idea that your medical condition will hinder your employability. It’s 2023. There are laws created to protect you from this. You can read more about them here. When I received a verbal offer from my employer, I shared the details of my medical situation, outlining necessary accommodations, and they were met (despite everyone and their mother telling me NOT to do this). I’m not saying you won’t face adversity in entering the workforce with a chronic illness. You will. But the ADA provides crucial support. Familiarize yourself with its laws; they're your safeguard.
You are your best advocate. You're well acquainted with this truth in the medical realm, but it holds just as much value — if not more — outside the walls of a doctor’s office. Your body, health, and well-being come before any value that the people around you may assign to it.
Always remember, while unwelcome advice may come off as hurtful, acknowledging that it’s typically coming from a place of love is important. Resentment and bitterness can burden the heart, so offer grace, but don’t be afraid to inform someone when they are overstepping. As a recovering people pleaser, I’m actively working on this myself! Chronic illness is lonely enough as it is. Sharing what you are going through is an incredibly personal choice, and the decision to do so should be made by you and you alone.
Do not allow those unfamiliar with your pain to stifle your voice.
Be well,
Amanda
