Eva Minkoff and Monica Michelle interview EACH OTHER on this very special 100th episode of the Invisible Not Broken podcast.

Links/suggestions mentioned:

Monica's other podcast - "I Can't Believe That Happened" Podcast

Libby: https://meet.libbyapp.com/ - "Did you know your local library has thousands of ebooks and audiobooks? You can borrow them, instantly, for free, using just the device in your hand."

Scrivener: https://apps.apple.com/us/app/scrivener/id972387337 - "Scrivener is the go-to app for writers of all kinds, used every day by best-selling novelists, screenwriters, non-fiction writers, students, academics, lawyers, journalists, translators and more."

Movies/TV shows

• House
• How I Met Your Mother
• Friends
• Sex and the City
• Diagnosis (documentary)

Hosted on Acast. See acast.com/privacy for more information.

➡️ visit https://www.sufferingthesilence.com/

➡️ visit @sufferingthesilence (IG) & @sufferingthesilence (FB)

Today’s episode is about stigmas and speaking your truth. Meet Allie Cashel. 

Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate workshops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.

Our conversation covers

1 the unjust power dynamics in healthcare

2 the struggles in being misunderstood

3 how we can grow stronger from other peoples stories 

QUESTIONS WE ASKED ALLIE:

·      What is your illness(es)?

I was diagnosed with Lyme disease for the first time in 1998 and was in treatment on and off through 2010. I don’t deal with active Lyme + co-infections anymore, but still deal with effects of long-term infection and treatment.

·      What’s your business/initiative?

The Suffering the Silence Community

·      What conditions/audiences do you cater to primarily?

Illness & Disability Community

·      How did your illness shape your career?

It’s shaped my entire career. I have made choices about my lifestyle and work environment based on my symptoms and managing my health.

·      What are some stories you like to tell?

I love to tell the story of starting STS, stories about our retreats, about marchingwithme, and about the power of community!

·      What makes your mission as an “influencer” unique?

We work with so many different demographics of people and really use the power of storytelling and narrative to bring everyone together.

·      What’s your latest project/post/feature that you are most excited about?

Documentary series Trust me I’m sick and new photo series!

·      What are you most passionate about in regard to your work/helping people?

Helping people find their voice.

·      How do/did you handle flares while working?

Patience and lots of rest!

·      If you had one message to send out to every chronic illness warrior out there, what would it be?

There is power in our stories.

·      What was journey like finding the right care? Did you find good practitioners? (Diagnosis, treatment, management, etc.)

I had trouble for years, but have been lucky to work with great doctors ever since.

·      Why do you think the patient-practitioner relationship is important?

You need to be able to advocate for what you need. If you don’t trust your provider, you can’t do that.

·      What does “trust” mean to you in the patient-practitioner relationship?

Open dialogue. Respect.

Hosted on Acast. See acast.com/privacy for more information.

Website/Blog, Twitter, & Instagram Handle

@wendinicholson @parentingactually www.parentingactually.com

What is your disorder? *

LCAT Deficiency | Fibromyalgia | Functional Nuerological Disorder

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was who I am now just with more capability

What would you do if you were not dealing with your invisible illness?  *

I would not value the good times like I do now.

What would you like people to know about your daily life? *

That I make it a point to make each moment count.

What would make living and moving in the world easier for you? *

Do you have any life hacks? *

TONS! Weighted blanket Holistic Living Tons more

Note from Monica I could not find this company but this is the least expensive one I found EVER. Yes, it is on Amazon. No I do not support Amazon for MANY reasons. Yes, I use them. Feel however you need to about this.

What kind of support do you get from family or friends? *

My husband is amazing. I have a few friends but to be honest, I don’t talk about my health. I’m a big believer in manifesting so if I focus on it, that’s what I’m going to attract more of.

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. All the time. My own family has mentioned that they think I’ve made it all up. Why anyone would do that is beyond me. What changed the game was one member came to the hospital and the doctors gave me a life expectancy. They looked into my father’s eyes and gave him a number. It became real in that moment.

How has your chronic illness affected your relationships? *

• I have to cancel plans often, so that’s a real bummer. I have to watch what I eat or else I will feel impacted by certain foods so that can be annoying to some. Flares are unpredictable and they can happen right in the middle of an outing, and then I have to cut the time short. I also have little tolerance for people who complain about things I wish I had. I have a zero whining policy. If I have a friend who complains about something he/she can control, that impacts our relationship. Fortunately I don’t spend time with people of this description.

Is there anything you are afraid to tell people in your life? *

• I’m very vocal about most things on my mind. But I have been known to suffer in silence. I literally count the time I know I have left. My kids will be teenagers. Most moms are preparing their thoughts and emotions for their children to go to college and purse their dreams. While I do that also, I am silently preparing them for life without their mother as if it’s it’s inevitable

Does the fact that your disease is invisible change how healthcare professionals treat you? *

• Yes. Because it’s rare, most docs either over treat, under treat, or call me insane. Lol

What is your best coping mechanism? *

• Singing. It is physically impossible to sing and feel or think anything other than the music and lyrics.

What are you the most concerned about and the most hopeful for in the future? *

• Concerned about my family, naturally. Hopeful that time spent is time well wasted, filled with memories and joy. Most people not on borrowed time take their days for granted.

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.

it’s all encompassed in my diagnosis

What is the hardest and/or best lesson your condition has taught you?

• To value very good day and accept the bad. Anything else is fruitless and a waste of time and energy.

What is the best purchase under $100 that helped your life

Honestly? My essential oil Starter Kit (ok it was $150) with 12 options for a med free, side effect free life. It was a gateway to a healthy daily life, lessening my flares and my pains.

Any questions you think we should add to this list?

• How can friends and family help you the best? What does support look like to you?

Hosted on Acast. See acast.com/privacy for more information.

Website/Blog, Twitter, & Instagram Handle

@wendinicholson @parentingactually www.parentingactually.com

What is your disorder? *

LCAT Deficiency | Fibromyalgia | Functional Nuerological Disorder

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was who I am now just with more capability

What would you do if you were not dealing with your invisible illness?  *

I would not value the good times like I do now.

What would you like people to know about your daily life? *

That I make it a point to make each moment count.

What would make living and moving in the world easier for you? *

Do you have any life hacks? *

TONS! Weighted blanket Holistic Living Tons more

Note from Monica I could not find this company but this is the least expensive one I found EVER. Yes, it is on Amazon. No I do not support Amazon for MANY reasons. Yes, I use them. Feel however you need to about this.

What kind of support do you get from family or friends? *

My husband is amazing. I have a few friends but to be honest, I don’t talk about my health. I’m a big believer in manifesting so if I focus on it, that’s what I’m going to attract more of.

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. All the time. My own family has mentioned that they think I’ve made it all up. Why anyone would do that is beyond me. What changed the game was one member came to the hospital and the doctors gave me a life expectancy. They looked into my father’s eyes and gave him a number. It became real in that moment.

How has your chronic illness affected your relationships? *

• I have to cancel plans often, so that’s a real bummer. I have to watch what I eat or else I will feel impacted by certain foods so that can be annoying to some. Flares are unpredictable and they can happen right in the middle of an outing, and then I have to cut the time short. I also have little tolerance for people who complain about things I wish I had. I have a zero whining policy. If I have a friend who complains about something he/she can control, that impacts our relationship. Fortunately I don’t spend time with people of this description.

Is there anything you are afraid to tell people in your life? *

• I’m very vocal about most things on my mind. But I have been known to suffer in silence. I literally count the time I know I have left. My kids will be teenagers. Most moms are preparing their thoughts and emotions for their children to go to college and purse their dreams. While I do that also, I am silently preparing them for life without their mother as if it’s it’s inevitable

Does the fact that your disease is invisible change how healthcare professionals treat you? *

• Yes. Because it’s rare, most docs either over treat, under treat, or call me insane. Lol

What is your best coping mechanism? *

• Singing. It is physically impossible to sing and feel or think anything other than the music and lyrics.

What are you the most concerned about and the most hopeful for in the future? *

• Concerned about my family, naturally. Hopeful that time spent is time well wasted, filled with memories and joy. Most people not on borrowed time take their days for granted.

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.

it’s all encompassed in my diagnosis

What is the hardest and/or best lesson your condition has taught you?

• To value very good day and accept the bad. Anything else is fruitless and a waste of time and energy.

What is the best purchase under $100 that helped your life

Honestly? My essential oil Starter Kit (ok it was $150) with 12 options for a med free, side effect free life. It was a gateway to a healthy daily life, lessening my flares and my pains.

Any questions you think we should add to this list?

• How can friends and family help you the best? What does support look like to you?

Email address *

[email protected]

Skype name

https://join.skype.com/invite/B1xTxyWahhzJ

Website/Blog, Twitter, & Instagram Handle

@wendinicholson @parentingactually www.parentingactually.com

What is your disorder? *

LCAT Deficiency | Fibromyalgia | Functional Nuerological Disorder

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was who I am now just with more capability

What would you do if you were not dealing with your invisible illness?  *

I would not value the good times like I do now.

What would you like people to know about your daily life? *

That I make it a point to make each moment count.

What would make living and moving in the world easier for you? *

Do you have any life hacks? *

TONS! Weighted blanket Holistic Living Tons more

Note from Monica I could not find this company but this is the least expensive one I found EVER. Yes, it is on Amazon. No I do not support Amazon for MANY reasons. Yes, I use them. Feel however you need to about this.

What kind of support do you get from family or friends? *

My husband is amazing. I have a few friends but to be honest, I don’t talk about my health. I’m a big believer in manifesting so if I focus on it, that’s what I’m going to attract more of.

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. All the time. My own family has mentioned that they think I’ve made it all up. Why anyone would do that is beyond me. What changed the game was one member came to the hospital and the doctors gave me a life expectancy. They looked into my father’s eyes and gave him a number. It became real in that moment.

How has your chronic illness affected your relationships? *

• I have to cancel plans often, so that’s a real bummer. I have to watch what I eat or else I will feel impacted by certain foods so that can be annoying to some. Flares are unpredictable and they can happen right in the middle of an outing, and then I have to cut the time short. I also have little tolerance for people who complain about things I wish I had. I have a zero whining policy. If I have a friend who complains about something he/she can control, that impacts our relationship. Fortunately I don’t spend time with people of this description.

Is there anything you are afraid to tell people in your life? *

• I’m very vocal about most things on my mind. But I have been known to suffer in silence. I literally count the time I know I have left. My kids will be teenagers. Most moms are preparing their thoughts and emotions for their children to go to college and purse their dreams. While I do that also, I am silently preparing them for life without their mother as if it’s it’s inevitable

Does the fact that your disease is invisible change how healthcare professionals treat you? *

• Yes. Because it’s rare, most docs either over treat, under treat, or call me insane. Lol

What is your best coping mechanism? *

• Singing. It is physically impossible to sing and feel or think anything other than the music and lyrics.

What are you the most concerned about and the most hopeful for in the future? *

• Concerned about my family, naturally. Hopeful that time spent is time well wasted, filled with memories and joy. Most people not on borrowed time take their days for granted.

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.

it’s all encompassed in my diagnosis

What is the hardest and/or best lesson your condition has taught you?

• To value very good day and accept the bad. Anything else is fruitless and a waste of time and energy.

What is the best purchase under $100 that helped your life

Honestly? My essential oil Starter Kit (ok it was $150) with 12 options for a med free, side effect free life. It was a gateway to a healthy daily life, lessening my flares and my pains.

Any questions you think we should add to this list?

• How can friends and family help you the best? What does support look like to you?

Hosted on Acast. See acast.com/privacy for more information.

Nitika Chopra has been a leader in the wellness industry since she founded her blog in 2010. As the host of the Talk Show Naturally Beautiful on Z-Living and as the on-air expert for Fresh on QVC, Nitika has always empowered women to use beauty as a tangible access point to self-love.

Known for her straight-forwarded tone and intense vulnerability, Nitika recently took everything she had learned from suffering with psoriasis and psoriatic arthritis for the past 27 years and created a conversation about self-love in the chronic illness community. With her experience in public speaking, her highly engaged social media following and her raw and honest writing that she shares weekly on her blog, Nitika is determined to get honest with her audience so that they can get honest with themselves in a way that truly transforms lives. You can join her at the first ever Chronicon in the fall of 2019 in New York City and daily on her instagram @NitikaChopra.

In this episode we talk about:

·     Being human rather than an influencer

·     Definition of self-love

·     Dating someone who loves you despite your illness

And so much more!

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➡️ Watch the video version of this interview  

👉 find more episodes like this on Invisible Not Broken

👉 read and watch more content (or submit your own) on the #Wellspo blog 

___

Episode supported by Wellacopia - the first matching site that helps people with chronic illnesses find their ideal, long-term, specialized practitioners (a similar approach to a dating site!).

Our mission is to help build better, trusting healthcare relationships and therefore, see better outcomes and quality of life.

👉 Find your ideal practitioners - https://www.Wellacopia.com

Hosted on Acast. See acast.com/privacy for more information.

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!

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!

Hosted on Acast. See acast.com/privacy for more information.