Episode 17 – 4 Ways to Help your Disabled Friends – Transcript

Background sounds of babbling brook.

Host Misty:

Good afternoon, Thank you for joining me on SavvySpoons, it is a beautiful Wednesday with gray skies and a barometric pressure system that is just turning my head into a trash compactor. My whole body actually just kind of feels like it’s being squeezed and poked and prodded, I’m not enjoying it.

It’s been a… a hard couple of weeks and I’ve been in a place that is not pleasant so I haven’t been recording a lot but I wanted to pop in and record today because I find some sort of cathartic release in this process and in knowing that my words are going out into the internet and to the ears of the few people who want to hear them so Hi! Thank you for listening.

I’ve found my tribe guys and in a place I did not expect. Twitter!

I have never used Twitter for anything supportive. I have occasionally gone on to follow @GeorgeTakei and be like “Oh he has something funny to say”. My husband and I call him Himself because he’s very important to us, we like his sense of humor.

“What did Himself have to say?”

But I haven’t really found Twitter to be a place where I pour out my heart and soul out and it is healed by other people reaching out to me so I was pleasantly surprised when I discovered that is exactly what it is if you reach out to the right people.

So #DisabilityTwitter:

Hi!. I love you.

You are wonderful. and you make my heart feel cradled in gentle arms which is nice because normally it feels like it is being played with in a game of backgammon.

Jazzy transition music for 13 seconds.

I wanted to talk a little bit today about how you can support people who are in chronic pain or have a chronic condition or are just aren’t doing very well.

I know that there’s a sense of a need to fix it and I can tell you that we get that sense and we aren’t trying to be jerks when we are frustrated with you when you’re offering your helpful hints but we hear those helpful hints from everyone all the time.

And when I say everyone I mean EVERYONE. Like, grocery store clerks that we don’t know, our servers at restaurants if we get out, random people that we are on hold with for the telephone department. I mean anybody who has a clue that you have a headache that lasts longer than 3 seconds, or you are disabled in some way, you have pain that is unexplainable, you’ve been to the doctor more than once.

Everyone has a cousin who had that or an aunt who had that or they have a naturopath they would love you to go see or they’ve got a chiropractor that can fix it, everybody has a fix it.

So when you surrounded by well meaning people who are constantly offering you solutions you start to get frustrated because you don’t want to try 100,000 different solutions you just want someone to say “OMG that sucks.”

Right?

Because it does suck.

It turns out I have at least three incurable chronic conditions that as of this moment have been bedeviling me for over eight years and medical science have been unable to cure or even control adequately I will add.

I have tried dry needling, I have tried massage, I have tried herbs, I have tried sound therapy, I have tried meditation, mindfulness, mental health therapy. I have tried prayer. I have tried so many different things. Electroshock treatments, TENS unit treatments, Chinese medicine, Japanese Medicine, diet restrictions, going off of dairy, having my hair analyzed for food sensitivities, there is such a long list of things I have tried you would not believe it. It is a binder that I bring with me to doctors.

Right?

It’s huge.

I have tried traditional and non-traditional medications and where I am right now is like in tears levels of frustrations so I am in pain when I am expressing being in pain I am also expressing 8 years of constant unending pain with 8 years of hoping and trying and 8 years of being failed by everything.

So I’m not in a state of mind where a new thing to try is something I welcome whole-heartedly and excitedly and most people in my position aren’t.

All we really want is to be treated A: like we actually know what we are doing and have done research on our own conditions. Right?

When somebody is an expert in their field and they tell you “Oh, I’m an expert landscaper and I designed this amazing garden today.” you don’t have a tendency of telling them “Oh well did you put eggshells around your flowers so that slugs don’t get them?”.

Most people don’t do that.

But when you have a chronic illness that you’ve lived with your entire life or years you get everybody’s eggshell theory the moment you mention it. You’re not treated like an expert in your own body or an expert in your own disease. You’re treated like you’re a child.

So the first thing that you can do to be good to and kind towards somebody in your life who is disabled, has a chronic illness is treat them like they are an expert in their own condition because I can guarantee you that they are.

Right?

If they want help from you or advice from you they will ask you they will say do you have any idea what to do about this because trust me they are not afraid to ask for help from you.

So that’s the first thing you can do. The second thing you can do?

Don’t be afraid to listen to them talk about their pain.

Because it hurts and it’s not going away and the fix-it mentally totally denies somebody’s ability to express their pain so the second kind thing you can do for somebody who is in that poistion is just shut your mouth and open their ears and just let them express:

God I am so tired of waking up hurting everyday.

And just, if you don’t know what to say reach out a hand and pat their knee or if that’s not where you are, if you’re not in the touch them relationship part just say “I hear you that sounds hard.”

Right? Reflective listening language. “I hear you. That sounds hard.”

Just being heard is so important.

It just makes you feel that there’s somebody out there that genuinely cares about what you have to say and about your experience.

So we started with treat them like an expert in their own condition and we moved on to active reflective listening. Listen to what they have to say and just reflect back “I hear you say you’re in pain, that sounds hard.”

Don’t try to fix it, because unless you are a specialist in the are in which they are hurting you probably can’t.

The third thing that you can do is spend time.

It’s difficult when you have a condition that prevents you from being an active participant to spend time with people. I am supremely and sublimely lucky in my friends and family. Many of my friends I have had since childhood so when my condition hit they were already invested in me and had been for about three decades.

So most of them decided to stick around and put up with the fact that I was no longer the super fun-energetic-let’s-go out and do stuff together kind of person that I had previously been.

So I have friends who understand that when they schedule a days with me there’s like a 40% chance that I will cancel, they just know it and so they plan to maybe have a day at home to do chores instead of time with me. They are okay with it, they don’t guilt me about it, they don’t give me crap about it.

It took us time to get there and what I’ve been told by them was what helped them get there was just me being really honest and saying “I love you and I miss you, I want to make plans with you but I’m afraid too because I may have to cancel.”

Once they understood that my reluctance to make plans centered more around my unwillingness to make plans that I would have to cancel then so many of them said “Then we’ll make plans and if you have to cancel we’ll just reschedule and we’ll just understand.”

So if you have someone in your life who stopped making plans with you when they got sick check in with them and say:

“Hey are you no longer making plans with me because you’re worried that you are going to have to cancel and what effect that’s going to have on our friendship?”
“Because if that’s the case let’s just agree that we’ll make plans and if you have to cancel we’ll just reschedule and that I won’t be mad or upset and you’re not allowed to feel guilty.”

Making those agreements in advance tells that person in your life that it’s the spending time together that is the most important and that it really matters.

Other things that you can do for them if there are environments they just can be in ask them about it and make plans that fit.

Like I am super sensitive to noise now and quite often light so nightclubs, no longer a thing for me. So are loud parties, I just can’t do that. Before the pandemic a friend of mine had her birthday party and instead of having loud music she rented a silent disco for her guests. I could have cried, it was just amazing. I got to put on headphones and dance around to music without people super bothered by other people’s music. It was like a dream. It was perfect.

So that kind of thing can make a big difference.

Finally it seems like if you are having a party or an event or something that the person would not be able to go to that it would be better to not invite them, I’ve been on the other end of that and it, it hurts, so invite them.

Even if the invitation you send is “Hey I wasn’t able to make this event fit your needs but I wanted you to know you are welcome if you can make it work.”

Or “I wanted you to know I was thinking about you even though I couldn’t make it work.”

Communication is huge and just reaching out and telling the person that you love that you are thinking about them is huge.

So that’s what I’ve got.

  1. 1. Treat them like they are an expert in their own condition.

No more offering solutions you read about on the internet. laughter I know it’s tempting but stop it. Seriously.

2. Make time for them.

3. Active listening.

4. Continue to invite them to places.

Those are my two cents on ways to be kind and helpful to people, to make a difference, for the people in your life that have chronic conditions.

Thank you for joining me today.

Stay safe, and be well.

crawling out of the vortex of suck…

(or my steps for getting back into the world after falling into a medically induced depression.)

I’ve been struggling a lot with morale over the last month.

That’s an understatement. I’ve been wondering if being in this much pain all the time is something I’m going to be able to continue to do for as long as I have previously planned.

To make matters worse, I keep getting sicker, in newer and unexpected ways, as though my body wants to make sure I don’t get too comfortable with the degree of discomfort I am currently dealing with.

The latest issue, an out of the blue inability to eat coupled with stomach pain, weight loss, and constant fullness, was supposed to be an easy fix.
I was scheduled for an in and out surgery and told I would be better in a month. Instead I’m looking at confused medical faces and clear imaging. Another unique problem they need to send me to a specialist for.

In the meantime I’m unable to eat more than about 1/2 cup to 1 cup of food at a time. I struggle with a small protein shake or cup of soup. So I’m losing weight, low energy, and have no energy at all.

I’ve been in bed in my room for the better part of a month as I healed from the unnecessary surgery and grappled with this idea that I have to deal with yet another issue. I was getting down. Dark. Sad.

Then I realized I have to climb out of this damned vortex of suck and find a way to start living again or, simply put, I’m not going to make it through this.

So I started small. I started doing 2 or 3 sit ups with my husband before his workout, the old-school kind with him holding my ankles for me. Then I added planking for 10 seconds. I increased the amount of planking a little bit each day. I am now up to 25 seconds.

I ordered some vinyl wallpaper to decorate our room and made small changes to the walls, sometimes a few feet at a time. I did the wall behind our bed one day and it took 6 hours. I had to rest after. I attached each strip.

I walked back and forth in front of the house like someone who is looking for a lost object of great value.

I started picking up small things around the house, dog destroyed toys and torn up cardboard, sweatshirts that need putting away, etc.

I cooked a meal for myself instead of eating only smoothies.

I opened the windows in our bedroom and changed the sheets, made the bed, and vacuumed the rug. Then I lay on the bed covered in sweat and panting until I could sit up enough to take ibuprofen. Then I curled up under a heating pad. I overdid it. Too much too soon.

I rested a few more days.

I started doing more, cleaning things, showering, making small changes. I sat down to paint and realized my arms were tired after holding my brush up for a few minutes. I cried about that too, but then I lowered the easel and painted some more.

I fixed small, easy to fix problems around the house. Rehung artwork and photos. Folded and put away blankets, asked for help relocating small furniture.

I walked my dog, made myself sit on the porch in the sunlight. Finally went and saw friends.

In short, I forced myself to re-engage.

I’m still hurting. Physically, mentally, and emotionally. I still feel overwhelmed and tired and just like there is such a slog ahead of me.

I no longer wonder why I am doing it. I am feeling satisfaction in accomplishing small things. I am feeling better when I am not lying here with nothing to think about but pain.

I am slowly crawling out of the vortex of suck.

Behind the scenes…

of a spoonie podcast. It’s no fancy recording studio or even my teenager’s online gaming set-up. It’s just a quiet bedroom, a couple of dogs, my computer, and a not too pricey mic.

I don’t even have to get out of bed to record, which is a good thing, especially for this latest episode “I am not ok”
Bear is my security. He likes to make sure no one interrupts recording sessions.
Penny is more interested in editing my posts. She does so with intense snuggles.
There’s my editing “booth”. Ok, it’s my lap.

Managing life with chronic illness requires savvy spoons