Unseen and Unheard, Part II

If you didn’t get a chance to read part I, you can access that here for context. I started with the negatives, the struggles of living with an invisible illness and it was heart wrenching to write and then to read it over. Sometimes I think I’m so focused on just getting through the day, through the hour, through the minute before me that the overall struggle isn’t as clear. Reading it over in black and white broke my heart all over again. I also didn’t realize how many of these experiences were and are still weighing on me, how much they still sting.

A dear friend and fellow Type A personality commented on Part I that part of the issue, from her perspective, is that it takes so much effort for some of us to ask for help that when we make that gigantic effort and the response is not supportive, it’s worse. That resonates with me. I’m usually on the giving end of support and being on the receiving end still isn’t comfortable and it takes a lot for me to actually ask. I think having to ask for help has been one of the most difficult adjustments I’ve had to make due to MBC; just another thing that has been irrevocably changed.

I was asked at a presentation recently, after I’d waxed on about what NOT to say and what NOT to call those of us with MBC, about what to say and what to call us. My response? There’s no one size fits all and starting with a question is the only way to ensure that you aren’t inadvertently offending or triggering someone. The fact of the matter is, what makes each of us feel seen and heard is going to be different and sometimes it’s different for the same person in different circumstances. If you want to provide support to someone, especially someone you don’t know intimately, start with questions. Even if you know the person intimately, starting with questions is a good idea too.

Another dear friend posted on Twitter recently this list of options:

Silke is someone who offers me support regularly so I can tell you that she practices what she posted about. For those of us in the MBC Community, we often have new and novel experiences regularly as we navigate this illness and all of the different treatments. Always asking rather than assuming when you want someone to feel heard and seen is important to remember.

My instinctive method of showing support are usually those things that make me feel supported. In a recent training for the mentors of Project Life (if you are living with MBC, you should check out this amazing wellness house), we asked each of the ladies to give us the list of things that make them feel supported, the things that fill their cups. The variety was as unique as each of them are individually and those of us doing the training had to step back and re-think how we were planning to provide support. This would be a good question to ask those around you frequently.

And that was a good reminder for me to ask more often rather than defaulting to what helps me.

Recently, as I was going through progression and was struggling, another dear friend, Janice Cowden, posted in a Facebook Support Group where we are co-Admins that I love to get cards (it’s true) and if anyone wanted to send me a card, she’d give them my address. Now that, that was a kind and thoughtful gesture from someone who knows what makes me feel loved because she asked me and then followed through. What was even more amazing was that I got a flood of cards from a variety of people, some with short or long handwritten comments, some handmade with a lot of thought and effort, every single one selected with care.

Another friend, who saw the suggestion to send cards in that group, sent me a Facebook message saying that that this was just not feasible for her. She did send me a regular message daily to check on me for several weeks during the thick of the struggle to change medications, detoxing and getting used to the new side effects. Her messages made it clear that she didn’t expect a detailed response, but that she wanted to know the details if I wanted to share, that she was there to process the changes with me, when I was ready. Knowing that I had that as an option made me feel seen and heard as my own pace.

I am double masked wherever I go and have gotten all of the vaccinations and boosters available; my husband and parents have also gotten their shots and my boys have gotten their first shots as well. We are working very very hard to stay safe and healthy and stay a safe distance away from people generally. Now that masks are not as prevalent and most of the mandates have been relaxed if a person is vaccinated, our stance on masks is starting to stand out a little. Recently, I was volunteering at my kiddos’ school with another mom who has been vaccinated and wasn’t wearing a mask. She took the time to ask me if I wanted her to mask up while we were in close proximity, if that would make me feel comfortable. That is a clear example of looking at a situation from another person’s perspective and offering to adjust for their comfort.

From my experiences, both the recent ones I’ve described here and from previous experiences, here’s my list of suggestions to ensure that those you love and care about are seen and heard, in particular those who are dealing with a serious illness:

• Make suggestions as to what you can offer — say, I have a few hours on a Saturday afternoon, would it help if I came over to clean your house? Say, I’m going to the grocery store today, what can I pick up for you? Say, would you like to have a date night with your husband, I’d be happy to watch your kiddos if that would help. Say, I have some free time this weekend and would love to take you out for coffee/wine/venting, what time works for you?
• Ask questions and then ask again — the experience of a crisis doesn’t end when the immediate crisis is over, sometimes the aftermath is worse, so stick around and keep asking.
• If you have asked/offered/suggested and there is no response immediately, just wait. Don’t get offended and don’t badger if there is never a response. Sometimes even responding to a text is just too big of an ask. You might just remind the person every so often that the offer is still there, that you still want to know the answer when they are ready.
• Follow through — if you’ve asked what makes someone feel seen/heard, do that or arrange for it to happen, within reason; also, if you’ve made a plan, be sure to show up. For those of us with a limited amount of energy, showing up is a big deal, we have to make a plan to ensure that we have the energy to do something and the time to recover afterwards. Honoring that effort is key.
• Watch for what lights the person up — what makes them gush or cry happy tears. Especially if the person is someone who doesn’t cry often, this is a big indicator that whatever it was was a big deal.
• Make eye contact. I realize that long distance this may be difficult, but it’s such a key part of connecting with other human beings. We all are so distracted by phones or responsibilities that the act of just focusing on one person becomes more and more novel. And that’s what makes it special.
• While I realize not everyone will be comfortable with physical touch; at the same time, a hand on an arm or knee can be so very impactful, not to mention a hearty hug
• Comment and share on social media. For those of us who blog or post about experiences in order to educate, it can often feel as though we are talking to ourselves. Not such a bad thing for us introverts generally, but it can get a little isolating. Commenting on or sharing a post not only helps with the weird social media algorithms but also helps us know that we’re not just screaming into the void, that someone is listening.

And now it’s your turn — what have I missed? What is it that makes you feel seen and heard? What communicates to you that you are not alone, that you are not spinning your wheels or screaming into the void? I’m sure my list isn’t complete and I would love to hear what YOU think!