Stay ConnectedThe podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain.
“Explicitly Sick Podcast” with Monica Michelle + “[Human]care Podcast” with Eva Minkoff
Be Kind. Be Gentle. Be A Bad Ass.
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Looking for a more inclusive, accessible way to date while disabled or chronically ill? 💘 In this eye-opening podcast episode, we talk to Jacqueline and Alexa Child, the founders of Datability — a revolutionary dating app built by and for the disability community. They open up about dating with chronic illness, building tech for accessibility, and why representation in love matters.
This episode is perfect for anyone searching for disability-friendly dating apps, chronic illness support, or inspiration from disabled entrepreneurs.
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📌 Follow for more disability advocacy, inclusive tech, and real talk about relationships.
#DisabilityDating #Datability #InclusiveLove #ChronicIllnessAwareness #DisabledAndProud #AccessibleDating #DatingWithDisabilities #DisabledEntrepreneurs #RepresentationMatters #PodcastRecommendations #PinterestPodcast #LoveWithoutLimits
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Interview With Social Security Disability Why It Is So Hard to Access Benefits with Author, Spencer Bishins
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In this episode of Invisible Not Broken, we discussed reclaiming a sex life that works with chronic illness. The goal is to find out what is possible instead of what is achievable. Dr. Phillips informed the audience that sex is ultimately about pleasure not performance. Fatigue, one of the most common and most disabling symptoms of a chronic illness can lead to a decreased participation in sexual activity. People with various chronic illnesses may fear that the exertion of sexual activity may cause a progression of the illness. They may mistake the sedation experienced after climax to weakness, and so needlessly limit their sexual activity. The healthy partner of the person with a chronic illness may fear that sexual activity will worsen the severity of the symptoms and may avoid intimate physical contact. Decreased desire and arousal is associated with the cerebral plaques and also with depression. Cognitive changes (apathy and confusion) may have a profound effect on the quality of life, including sexual functioning. Here are his tips:
· When fatigue is a major complaint, individuals can plan sexual activity for morning when people with chronic illness generally have more energy. It is perfectly fine to plan sex! It does not have to be spontaneous!
· Couples also may alternate forms of sexual activity, such as oral sex and mutual masturbation. Remember, sex does not have to be about penetration…it is only one form of sex!
· For those with bladder incontinence can be managed by emptying the bladder immediately before or after sexual activity.
· For individuals with bowel incontinence, sexual activity can be planned so that it precedes intestinal stimulants such as coffee and meals.
· Decreased vaginal lubrication can be treated with water-soluble lubricants, and dysesthesias may be relieved with medication for nerve pain.
· Vaginal lubrication is controlled by multiple pathways in the brain and spinal cord, similar to the erectile response in men. Decreased vaginal lubrication can be addressed by using generous amounts of water-soluble lubricants, such as K-Y Jelly, Replens, or Astroglide. It is not advisable to use petroleum based jellies (e.g., Vaseline ) for vaginal lubrication due to the greatly increased risk of bacterial infection.
· Uncomfortable genital sensory disturbances, including burning, pain, or tingling, can sometimes be relieved with certain medications.I consult with medical providers almost daily in my practice about the medications my clients are prescribed. These are common medications I see prescribed.
· Decreased genital sensation can sometimes be overcome by more vigorous stimulation, either manually, orally, or with the use of a vibrator and other sex toys. Exploring alternative sexual touches, positions, and behaviors, while searching for those that are the most pleasurable, is often very helpful. Sexual activity is all about exploring and this can make it exciting. Several online sex shops such as Come As You Are and Good Vibrations are great.
· Masturbation with a partner observing or participating can provide important information about ways to enhance sexual interactions. Remember, sex is about pleasure, not performance.
· When it comes to chronic pain, there has been real evidence that endorphin release from orgasm can alleviate pain and may possibly help people manage chronic pain. This is because endorphins block pain while enhancing parts of our brain responsible for pleasure.
· Oxytocin, a bonding hormone that increases when we hug have orgasms, may also have pain killing effects, according to a report by researchers from the University of Alabama at Birmingham.
· When you are in pain, it affects you and your partner. You don’t want to be touched for fear that you will ache even more, your partner, afraid of causing you pain, may withdraw and feel isolated. Therefore, sexual communication is important.
Remember, pleasure is the measure!
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Age *
21
What is your disorder? *
At what age did your disorder become a daily issue? *
17
Who were you before your illness became debilitating? *
I was a high school softball athlete, with opportunities to play college ball. Until I was diagnosed with chiari malformation.
What would you do if you were not dealing with your invisible illness? *
I would be a student athlete playing college softball
What would you like people to know about your daily life? *
Struggle daily with horrible migraines, and chiari. this is what caused me to create this company and our products to help track pain and symptoms accurately.
What would make living and moving in the world easier for you? *
less migraines and pain, daily migraines make living harder.
What kind of support do you get from family or friends? *
when I got diagnosed I had a huge support system from family and friends, they did not understand what I was diagnosed with because only a few people are aware of Chiari. But they still were there for me in any way they could.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes, when I first got diagnosed. I had a "friend" tell me her mom is a nurse and Chiari Malformation does not exist and I am faking my illness. I think having an invisible illness makes explaining your illness a little more difficult
How has your invisible illness affected your relationships? *
people do not like sick people. it is always an inconvenience to them. If it does not benefit them they do not care. My friends and family still continue to be a support, so my relationships have not truly been affected. Only when they ask to hang out or go out somewhere and I cant due to 10/10 pain
Is there anything you are afraid to tell people in your life? *
no, not really. I am always open to family and friends. I am trying to spread awareness about this, my family and I went through months of different remedies.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
yes, some professionals will not give you the time of the day. They do not listen to your exact symptoms and how you have been feeling which affects how quickly you can be treated.
What is your best coping mechanism? *
Coaching the sport I love, since I no longer can play this game. I cope with being able to coach and teach my players on how to excel in this sport and get them to the collegiate level. I also volunteer my time to coach a baseball event for kids with mental disorders. I like writing things down, from my feelings, to daily activities. it is very therapeutic and also I do not have to stress to remember everything. Since I struggle with brain fog and memory loss. I also love the gym but since my symptoms have been horrible, I have been limited to my gym activities.
What are you the most concerned about and the most hopeful for in the future? *
I am hoping to get relief from these debilitating symptom and provide life changing medical logs to everyone battling a illness like I am.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Spreading awareness about Chiari Malformation and how this illness has changed my life & my families. My mom being diagnosed with breast cancer when I was 16, how I had to mature faster than my friends. Using softball as my escape. My black out causing us to figure out I had Chiari, I could of blacked out while driving.
What is the hardest and/or best lesson your condition has taught you?
" it's not what happens to you, but how you react to it that matters" I love this quote. I have taken my personal illness and designed a management tool for people with chronic illnesses.
What is the best purchase under $100 that helped your life
A stem machine, for my back and my neck. Also my medical log, it had been a game changer for me during my illness.
May We Add You To Our Newsletter? *
yes
Any questions you think we should add to this list?
I am trying to spread awareness about chiari, the treatments, money spent, time wasted.
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Website/Blog, Twitter, & Instagram Handle
@eds_athlete
Name *
Kresenda Keith
What is your disorder? *
At what age did your disorder become a daily issue? *
29
Who were you before your illness became debilitating? *
PhD student, statistician, professor
What would you do if you were not dealing with your invisible illness? *
Likely teaching
What would you like people to know about your daily life? *
Every day is different and you never know what the day might hold so it’s important to celebrate every win of the day.
What would make living and moving in the world easier for you? *
A cool exoskeleton?
Do you have any life hacks? *
I do a lot of taping and bracing in order to help prevent subluxations
What kind of support do you get from family or friends? *
I am incredibly lucky to have truly amazing and supportive friends and family. I don’t think I would be able to do what I do if it wasn’t for them.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
All too often. The Paralympic committee doesn’t believe EDS is an applicable disability to compete so I’m constantly fighting those rulings.
How has your invisible illness affected your relationships? *
I’m blessed to have a boyfriend who understands that every day has a question mark. I am certain we would be far more active if it wasn’t for my health.
Is there anything you are afraid to tell people in your life? *
How frightening every day can be. You never know if it’s the last day you get to do something.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Often they don’t believe it’s a big deal.
What is your best coping mechanism? *
Acceptance. You don’t have to like it but you have to accept it. It’s freeing. Like I accept that someday I might not get to lift anymore. I accept that someday I might not be able to walk. Accepting those hard truths helps you move forward.
What are you the most concerned about and the most hopeful for in the future? *
I’m hopeful that I will inspire other spoonies to come out and try things they were afraid of. It might be something like a walk or asking someone out on a date. It doesn’t have to be the gym. Anything. Just try something.
What is your favorite swear word?
I say fuck a lot. A lot a lot
What is the hardest and/or best lesson your condition has taught you?
To embrace every day as the last
What is the best purchase under $100 that helped your life
A tens unit. Priceless.
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David Tennent Catherine Tate Much Ado About Nothing
What is your disorder? *
Fibromyalgia, migraines, vaso vegal syncope, ptsd w/ bipolar & borderline
At what age did your disorder become a daily issue? *
22
Who were you before your illness became debilitating? *
A dancer, manager of a weekly goth event, life of the party, and drunk more than not
What would you do if you were not dealing with your invisible illness? *
I honestly don't know. If it suddenly disappeared tomorrow though I'd probably either run for office or work as an advocate for other spoonies.
What would you like people to know about your daily life? *
It's somehow mind numbingly boring and heart attack stressful at the same time. I spend at least 75% of my time either resting/healing or treating my conditions.
What would make living and moving in the world easier for you? *
More awareness and consideration for the difficulties in using a mobility aide, and more patience when my brain just can't find the information someone's asking me for. Basically, people need to be nicer to each other.
Do you have any life hacks? *
I probably have too many, but my biggest one is if I can't figure something out myself I ask for help be it filling out paperwork or figuring out how to get myself up on time in the mornings. It never hurts to get a few different perspectives on a problem, even if it only serves to make clear what doesn't work for you.
What kind of support do you get from family or friends? *
My husband and children do alot to help and support me, though both my husband and son have their own chronic physical/mental health issues, and my mother in law tries but can't quite understand so it gets frustrating. As for friends I have one or two really great spoonie friends in other countries, but there's no one local who's willing or interested in developing a friendship with the sick girl who can rarely leave her house.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Oh yeah! Most notably my immediate family. I began having noticeable symptoms at 15 and by 16 they'd decided I was faking and refused to take me to any more doctors and began to refer to my health problems as wimp's disease or laziness syndrome. Hence all the self medicating w/drinking in my 20s.
How has your invisible illness affected your relationships? *
It's made them all more difficult. It's like my health creates all these added obstacles to every kind of relationship, from romantic to platonic and even familial. It's 100% why I don't have a girlfriend right now, it's not worth the spoons to try to even find a girl willing to date a married woman.
Is there anything you are afraid to tell people in your life? *
Not like a big secret or anything, but a lot of the time I'm too afraid of upsetting or inconveniencing people to speak up when I need help. I'm working on it though. So far people haven't reacted well.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
YES!!! Some get really irritated & rude while others are so afraid of making me worse they don't even want to do anything to help.
What is your best coping mechanism? *
Distractions! Mostly watching either educational stuff, comedy, or Marvel shows & movies with a few other fandoms thrown in. #whovian4life lol
What are you the most concerned about and the most hopeful for in the future? *
I worry most that I'll miss the early signs of something serious and end up even worse (happened twice already), and I pray daily for effective treatments.
What is your favorite swear word?
GodDamnMotherFuckingShit!
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
My baby youtube channel and living in a household with multiple invisible illnesses (Fibro, CSID, CTE*probably*, and mental health)
What is the hardest and/or best lesson your condition has taught you?
IDK if it's my conditions or just life but I've learned that everyone has trauma and that even the worst people are no different from anyone else in the fact that their past experiences have shaped who they are now, and that most people are honestly trying to do the right thing we just don't all agree on what it should be and I can and should love those people as the flawed, confused humans we all are.
What is the best purchase under $100 that helped your life
Two Old Goats lotion
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FEAR AND CHRONIC ILLNESS HALLOWEEN EDITION MONICA MICHELLE AND KYROS STARR TALK ALL ABOUT THE THINGS THAT SCARE THEM. Monica Michelle has been having a tough time with Ehlers Danlos Syndrome and a new diagnosis of MCAS and Kyros is have joint problems and some new troubling symptoms. Disability has never been so spooky.
In all seriousness warning if you have problems hearing about depression and things that go along with depression.
Panel Discussion: FEAR
Article Links
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An interview with Niko, founder of the chronic illness community and dating app Lemonayde, about dating with chronic illness and his own chronic skin issue Tinea Versicolor.
Name *
Niko Geoffroy
What is your disorder? *
At what age did your disorder become a daily issue? *
15
Who were you before your illness became debilitating? *
Before my condition, I was already pretty introverted and my skin condition really added to that and made it harder to get out of it.
What would you do if you were not dealing with your invisible illness? *
Since my illness is a skin condition, it is visible. I think all of my adversities are what pushes me to be as ambitious as I am. If not for my condition, I certainly would not have started Lemonayde.
What would you like people to know about your daily life? *
My daily life, especially when it includes any activity that forces me to take my shirt off, is full of a lot of explaining. Our culture is pretty hostile towards skin conditions, in general. The first question they need to know is, "Is it contagious?". Also, the assumption is usually that skin conditions are a result of poor hygiene, which, of course, is just not so. I take these moments to educate.
What would make living and moving in the world easier for you? *
More communities where people feel comfortable to be vulnerable in regards to their health without the expectation of judgement. There's a sense of relief and liberation that comes with being around people who you don't have to explain your health to.
Do you have any life hacks? *
More like mantras: 1) Your disadvantages are actually advantages. Find a way to use them as such. 2) The only two opinions I care about are that of parents. Everything else is noise. 3) Set your priorities and stick to them. Your health should be #1.
What kind of support do you get from family or friends? *
I love my family, they;re incredibly supportive, in that they don't treat any differently. And I pick my friends wisely. They don't see me any differently either. My family and friends know that I'm very independent and if I don't ask for help, it's because I DON'T want it. But if I do ask, I probably really need it.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
I've had moments when people were convinced that my skin condition was due to poor hygiene even though I explained it has nothing to with hygiene. But whatevs.
How has your invisible illness affected your relationships? *
Woo. My skin condition started to develop in High School, which we all know is the most unforgiving place known to man. And with the emergence of a skin condition, that I had convinced myself was unsightly, came the insecurities and self-doubt. I put up a whole lot of walls when it came to social and dating activities. For me, being intimate was pretty much off the table. I didn't want to have to find myself in the excruciating situation of having to explain my skin condition and having the whole world know about it. My first relationship started in college and it was with someone who also had a skin condition (psoriasis). This may sound weird now but I initially fought off this relationship only because I knew she also had a skin condition. I don’t know why, but I guess I just didn’t want to convince myself that I’m only supposed to date people who were “like me” (whatever that means). But I was also keeping myself away from something great. It was just a strange confusing paradox. Fortunately, I lost that fight and we started dating and it was a wonderful relationship. We bonded about things only we would be able to understand. We skipped the whole “worrying about my condition” phase and just went straight to the fun part. We dated for quite a while and eventually moved on, as with most relationships. I did explore other relationships after the first, but it was the first that gave me that initial boost of confidence; validation of my awesomeness; and the relief that all ISN’T lost after all.
Is there anything you are afraid to tell people in your life? *
Very little. I used to be afraid to talk about my skin condition, now I don't care at all. I also used to be afraid to tell people about my undocumented status, now I couldn't care less.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
The first time I saw a doctor about my condition, the first thing he recommended was Selsun Blue Medicated Formula. However, I told him that I've been using Selsun Blue for quite some time with no results and I asked him to prescribe something else. And this guy was just so unbelievably insistent. He told me I had to try it. But I didn't want to spend money on this doctor visit knowing that it would be a waste. And he did not let up. And it was extremely frustrating.
What is your best coping mechanism? *
Mashed potatoes and cookies. Also, I'm a self-healer. I like to do all of my healing and thinking on my own. So I meditate at least once a day.
What are you the most concerned about and the hopeful for in the future? *
This is on a grander scale but I do believe that our society is coming to the realization that empathy is the greatest healing power that's ever existed. My concern is that we will know that and consciously choose not to use it. However, my hope (and belief) is that we will. This can summed by the following lyric: You think the only people who are people Are the people who look and think like you But if you walk the footsteps of a stranger You'll learn things you never knew, you never knew.
What is your favorite swear word?
Clusterfuck
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
I'd like to mention Lemonayde and how and I why decided to created it. As well as the mission behind it. We don't have to get too deep into it.
What is the hardest and/or best lesson your condition has taught you?
My ability to accept outcomes I have no control over. It's also given me the single trait I believe is my superpower... Empathy.
What is the best purchase under $100 that helped your life
Coffee. The book "David and Goliath - Malcolm Gladwell". The book "Our Revolution - Bernie Sanders"
Any questions you think we should add to this list?
"What do you believe is your purpose?" OR "What is the source of your motivation? What's the fuel that keeps you going?"
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Thank you!What is your disorder? *
Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues
At what age did your disorder become a daily issue? *
19
Who were you before your illness became debilitating? *
A runner, softball player, and marching band lover who had to give that all up.
What would you do if you were not dealing with your invisible illness? *
I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.
What would you like people to know about your daily life? *
Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.
What would make living and moving in the world easier for you? *
Pain management and understanding of my condition as a whole.
Do you have any life hacks? *
Almond milk helps a sour stomach lol
What kind of support do you get from family or friends? *
I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha
How has your invisible illness affected your relationships? *
It has destroyed them and ruined my mental state.
Is there anything you are afraid to tell people in your life? *
I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
No, it makes them more understanding once I got my diagnoses and how to treat me.
What is your best coping mechanism? *
Sharing myself with others.
What are you the most concerned about and the hopeful for in the future? *
Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.
What is your favorite swear word?
FAQQQQQ(fuck) in all varieties haha
What is the hardest and/or best lesson your condition has taught you?
I need to learn self-love and self-coping mechanisms
What is the best purchase under $100 that helped your life
My yellow heavy duty portable wheelchair ramp haha
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Thank you!Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.
Right now CVS which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.
So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.
Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.)
I REALLY thought I could make it the entire day. What else are super high pain thresholds for?
SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.
It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.
For the record, I have Ehlers Danlos, POTS, and Fibromyalgia
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