Crohns, Fibromyalgia, Being Sick in Socialized Medical Care vs Being Sick, in For Profit, and mental health and chronic illness

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What is your disorder? *

Crohns, previously fibromyalgia/CFS (still deal with immense fatigue, joint and immune based issues)

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

15

Who were you before your illness became debilitating? *

Training full-time to be a professional ballet dancer. I had left traditional schooling in grade 9 and was pursing this at an elite level and doing home school at night.

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

Work more, be more social, definitely achieved more goals and dreams, have more money (i'd cry but I've gotta laugh at all those medical bills). On the plus side it's given me a tremendous amount of compassion and empathy for people, we're all struggling with something and many have it a LOT worse than I do. Also I have great knowledge and passion for health and wellness now, i'm constantly searching for research, help and hacks to get me through my day and heal my disease.

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

That it's tough a lot of the time even though most of the time I look normal...that's usually my "brave face mask". Generally if you see me wearing some form of bright colored lipstick, i'm struggling ha! Just because I look well or pretty or put together that often i'm not ok, I want to cry from tiredness, brain fog and constantly "sucking it up". That no I don't want to explain why I can't/don't eat certain foods or drink certain drinks. I'm not being "all LA" and yes i'm asking if there is dairy in that because it could send me to hospital. Please don't say "oh don't you miss eating that?" because often I might but generally that food makes me vomit or worse, so I've found my own happy place with food, which ultimately is healthier anyway. Also that having an autoimmune disease is all encompassing, it's not your identity but it definitely can be very restricting and debilitating. And when i'm having a flare, leaving the house is an ordeal and I'm not saying no to invites etc because I don't want to be there. Also currently since i've lost a lot of weight recently, don't tell me that i'm looking too thin. I know, thank you, i'm working on it and shut up.

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

Having the ability to have access to the health care teams and often weekly support (especially when I'm flaring like I am now) that I did when I lived back home in Australia. The medical insurance system here is depressing, even when I'm spending SO much money to be insured. It's still basically unusable with the co-pays!

Do you have any life hacks? *

Diet and lifestyle plays a key role in how I handle my crohns. I had a doctor tell once me that what I ate wouldn't affect it either way, I should have left there and then...laughable considering it's a disease of the bowels!! Gluten, dairy and refined sugar free, and highly inflammatory foods and drinks (coffee and most alcohol) make me unwell, so I steer clear. I used to be on a lot of awful meds but they were just band-aids, they made me go crazy (like suicidal) and had awful side affects. Low impact exercise, acupuncture (when I can get it). I wish I could do more. Stress is a killer but as we all know being unwell, not being able to work as much and all the mental woes that comes with financial pressure and feeling trapped in an illness lead to stress and anxiety. It's a hard one.

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

Immense amounts but I live away from my family so the majority of it falls on my darling fiance, Shane, who is a prince among men and has never made me feel less than because I deal with this. My family have helped so much financially over the years, especially when I was first diagnosed and literally couldn't leave the house I was so sick. Shane met when when I had just got out of hospital almost 6 years ago, I wasn't working because I was so sick and he thought I was the bees knees. I'm pretty lucky. I have a few special friends here in LA who are wonderful too.

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! I'd be a rich woman if i was given a dollar every time said "but you look so well!" I haven't had anything malicious but when someone says that, even when it's supposed to be a compliment, it does make you feel like screaming back "i was throwing up this morning and it feels like someone is stabbing me in the guts but thank you. I've lost modeling jobs because of sudden and dramatic weight loss that I couldn't control, that was a hard one because they thought I had an eating disorder.

How has your invisible illness affected your relationships? *

It can definitely strain it, especially when i'm flaring or don't have the energy for being as social etc. I can get very moody and sad/anxious too. As I said above, Shane my fiance’ is amazing but I know it's hard for him and he hates seeing me sick/dealing with this. I know he feels very helpless sometimes, as does my family.

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

Perhaps the mental health sides of auto-immune disease, especially those of the gut. Your gut holds 70% of your serotonin so if it's not working properly, your mood and general zest for life can be pretty smashed. I'm not afraid per say but the stigma around mental health is definitely there.

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

Yes, when I collapsed over 6 years ago it took doctors almost 6 months to diagnose me. 2 ER visits, me getting sicker and sicker and being told I had a stomach flu etc. It was only after I started passing blood that my mother demanded attention. Being a young woman also plays into that because doctors think you're hysterical, i've had female doctor friends confirm this to me! Other than that though, crohns is pretty well known as a nasty disease so I am generally well respected.

What is your best coping mechanism? *

Walking, yoga, journaling, being alone and quiet (loud noise when i'm feeling sick is the worst thing ever) but then around good people when I need, talking to my mum, sleeping, routine (super important for your stomach) and nourishing my body with good food/supplements. All really hard to maintain sometimes tbh. Sometimes I just need to cry!

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

All i've wanted since I can remember is to be a mother, so I'm concerned about my energy and vitality etc when having and raising them. I'm doing a lot of work on my body/health now so I can hopefully have healthy pregnancies and my body doesn't seemingly fall apart from the stress of it all. I'm hopeful that dealing with crohns/my poor immune system and general body woes won't be a daily thing one day soon and that the work i'm doing on myself and the help i'm continuing to seek will ease the burden I deal with.

What is your favorite swear word?

FUCK or "this shits me to tears!" I'm Australian, we could have a whole bloody podcast on this!

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

Patience, tenacity and picking yourself up, dusting yourself off and continuing on. Also that i'm not broken or less than. I am enough as I am even though i'm "tricky". The shit that we deal with on a daily basis would make most people crumble. We are warriors.

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

A TENS machine! I still get a lot of pain in my back and joints and this helps immensely.

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Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California


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