HOW TO TELL PEOPLE YOU HAVE A CHRONIC ILLNESS
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- เผยแพร่เมื่อ 26 ส.ค. 2024
- I know it can be so hard and overwhelming and intimidating talking about your chronic illness, or telling people for the first time. But it doesn't have to be and you aren't alone in the struggle. Today I am telling you how to tell the people in your life about your illness- family, work, school, friends and dating!
Leave a comment telling me your experiences with talking about your chronic illness!
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Thank you so much for this. I just got my first job after being diagnosed and haven’t worked in a year. I had the courage to open up about my colitis during my interview and turns out my boss has an autoimmune disease too and fully understood where i was coming from. She even asked me for advice about getting back into the world after having something traumatic happen to your body. It really gave me confidence that it was the right place for me ❤️
I find it so important to just be upfront and honest. It's taken me a long time to overcome feeling embarrased about my crohn's disease but I've gotten so used to it now that I have no problem in people knowing :D
I tell people basically when I first meet them that I have a condition called POTS, but I find I have a harder time talking about it with people that knew me when I was ‘healthy’. They know me in a different light and it’s harder for them to see me as I am
I have cerebral palsy and it hurts when close family don't understand when I can't do something or as fast paced as anyone else I have chronic pain I don't move as fast and can't and other impairments and limitations and they push me too much sometimes. They would leave me and I'd get lost so I try to go to a place they could find me or they push and tell me to speed up when I can't. Fatigue is the worst and they think I'm lazy
This was really helpful, thanks. I have severe chronic pain and I end up telling people about it more often than I'm comfortable with, just because it affects me 24/7. I have come up with a simplified version. For example, my daughter made a new friend at school and that friend came to her bday party with her mom. I was hunched over, wearing my ice pack, in crippling pain, and having a really hard time paying attention to the conversation. I felt like I had to explain it "sorry if I seem out of it, I'm in pain." She asked what's wrong, and I was like "I have Ehlers Danlos Syndrome, and I have chronic and severe back pain." No woe as me or anything like that. I didn't tell her everything about it and I didn't cry (though I wanted to), but I still felt bad afterward. I still felt like I shouldn't have said anything at all. But then, that would be weird. Maybe the answer is to just feel less bad, and this video helped a lot! Sometimes I just feel really, really shitty, and can't hide it, and there's probably nothing wrong with just saying so.
Thank you so much for your most information! I am 59 years old & have had ulcerative colitis since 2016. I then got the dreaded C Diff last September. My GI wants to start me on Remecaid infusions every 8 weeks for the rest of my life. But first he sent me for a fecal transplant, which I had 5 days ago. I’ve been in lots of stomach pain, bleeding & diarrhea since the night of my FMT. It’s been rough but I wanted you to know that you’re making me feel stronger! Thank you!
When I was a child I tried to say in simple terms in words they and I could understand, but i wasn't to open about it when my friends at school would see how things are hard for me it's easier to tell them. But it hurts when family doesn't understand my pain and other symptoms that my chronic condition causes. I try to be normal I don't tell everyone but now I am choosy to tell and feel better to tell other chronically ill people because they could understand. It is very emotional to talk about it cuz some people would laugh at me because I do things differently or get impatient because I can't move fast or talk with a normal flow and I feel ignored
You're very clear spoken, and know what you want to say and are able to clearly get your point across. You're also very proactive and know what the advocacy groups and laws are for each situation. Idk what you're going to school for, but I think you'd be good working in an advocacy group, either for the disabled, working in a Human resources department, or even being a lawyer.
In my health issues, I’ve found that a lot of doctors want to talk away the issue or they don’t listen to what the patient says, or arranges useless tests. I’ve had a really tough time trying to get them to listen and it’s a lot of crippling pain to go through and not have anything done about it...
YES! I totally get that! Prior to getting my colon removed, doctors told me it was "emotional abdominal pain" because I had gone through a really bad breakup. Or tried to get me to say I was on my period so they could blame it on cramps. It's bad because I live in Ohio and there are a lot of drug seekers here so it gives doctors a harder time of taking pain seriously. I'm so sorry that you've had a hard time getting doctors to listen to you. I would suggest contacting patient advocacy in your hospital. They are there to help guide you and be a medium between you and the doctors! It's a great resource.
I'm after total colectomy too and also in your age. I'm coming back to the university after a year of sick leave. You gave me hope, so thank you for that!
SHARE TIME! A thing hate is, when people ask why I like, don't drink alcohol, it's like, super annoying, I know they don't mean it but I wish they knew it's like rude. I don't wanna say "oh I have this disease" and then it's worse when you say "colitis" coz people think about the "regular" irritable bowel syndrome and it's like HA! NO. Nope....
It is so funny that you made this video! I had told one of my managers at work awhile ago because I was missing work because of a flare up, and I guess I just assumed he would notify my boss too because people talk, but he didn't. So last week I had to tell my boss that hey I need to go to the bathroom when I need to go, and no I'm not a slacker or going on my phone in the bathroom, I have UC. I think it is a very personal matter and only those who have been through it with me or need to know, know about it. I think telling people that I have UC changes how they look at me. I would have almost preferred a chronic illness that was visible from the outside so I wouldnt have to sit people down and tell them, "Hey I look like a normal, healthy 22 year old, but I am actually not that healthy, etc..."
I'm not going to lie- having my ostomy bag actually made things a lot easier from that standpoint. People would see that I had something going on & understood more. Even though everyone at my work knows, but still would act surprised if I had to call off for whatever reason.
That’s the worst part of invisible illnesses! Especially when it kind of makes you feel like you have something to prove! I’m sorry you’ve had to go through that!
Holy shit. I am so glad I found you been subscribed for awhile now. I am very sick and I need to get a gi done my boss does not give a shit about me and I am often late to work due to being sick. I am not even diagnosed yet and he said I will be fired if I can't get to work on time. I have also been late due to drs appointments. I said to my co worker if he says it again I am going to hr oh and to top it all off I ride my bike in all weather conditions and have not called off work in months. I used to throw up a lot too thankfully that has stopped but I would continue working and get my shit done then ride my bike home.... I kill myself for that shit place. I cannot wait till I can drive and find a better job. I will find the loud speaker and tell the whole building to kiss my ass when I find a better job. Love you so damn much you are such an inspiration to me. 💜💚💙💛 Wish me luck for the 20th I am scared shitless.
Thank you so much for making this video! I am going through a lot right now, and I have been very discouraged. This made my whole day! You’re wonderful♥️
Thank you so much! ❤️ this channel is here as a reminder that you aren't alone.
I just started following you recently. I really enjoy listening to you talk about chronic illness. I have lupus fibromyalgia thyroid disease diabetes and I was diagnosed when I was 35 I've been going to the doctor's for 10 years. I'm 57 now and it is difficult living with all of the procedures the doctor's appointments the missing of family functions or just life itself. I really appreciate you and your positivity and I've learned a lot of really helpful information from you I will follow you on Instagram and I wish you nothing but love and Better Health sweetie
I'm in a new school this year and it was kind of hard opening up to people about my chronic illness. I was diagnosed with lupus last november and I've been trough chemo and stuff so I lost my hair and everyone just thinks I have cancer and when I tell them I don't, they are just so confused because many people think that you only get chemo/lose hair when you habe cancer. This video has just helped me so much. Thank you❤️
I have celiacs disease it’s not that big of a deal for me to tell people. The only time I ever mention it is if the topic of foods comes around. A lot of people wonder what it is so I tell them, I’m also a vegetarian so we talk about that also.
Ulcerative colitis and crohn's are also covered under the ADA. So you can get written accomodations on file with your employer for that.
Great vid Emily!! And suuuuper cute outfit too, I love ur jacket + the glasses! 💕 I also had a scarf SUPER similar that was my absolute favvvv & I left it at a restaurant and never saw it again!😢 And cant find a good replacement ANY where, wahhhh 😭 But ANY who...VERY useful advice in this video, thank you for sharing & spreading the word! Something you don't think about until you NEED to...also super helpful for those who might be on the receiving end of news like this one day too (i.e.: significant others, coworkers, classmates, etc. etc.). Which will honestly happen more often than one may realize! So Thanks again for sharing this info babe! 😎👍
Reports from two conferences in Moscow and Krasnojarsk in 1988 (large variety of health problems)
There were about 30 published reports (Buteyko method, 1992) of about 40 Russian medical doctors and health professionals, who met during two conferences in Moscow and Krasnojarsk in 1988 in order to share their practical experience of application of the Buteyko method in over 20 medical hospitals and clinics in Russia. The total reported number of treated people, according to the published conference proceedings (Buteyko, 1991), was over 3,000. Although most of them had respiratory (asthma, bronchitis, rhinitis, etc.) and cardiovascular (hypertension, angina pectoris, ischemia, etc.) problems, hundreds were treated or relieved from arthritis, osteoporosis, epilepsy, ulcers, gastritis, kidney stone problems, hepatitis, different infertility conditions, skin diseases (e.g., dermatitis, psoriasis, eczema), etc. Typical reported results were either some or essential improvement for over 90% patients, while remaining patients were not able to normalise their breathing parameters due to absence of desire or motivation and quitting the method during its initial stages. Thus, those patients who achieved large CPs significantly improved their health state. Normalization of breathing always leads to dissapperance of symptoms and no need for medication.
Buteyko method. Its application in medical practice, ed. by K.P. Buteyko, 1991, 2nd edition, Titul, Odessa.
Thank you for this!! I was just recently diagnosed with PCOS and have IBS-D as well and it is so hard dealing with my work about it. I work in a corporate business and they just don't understand about my illnesses at all. It's so frustrating because I'm in so much pain but they don't get it so to them it's just an excuse to "get out of work". I wish everyone would watch this video!!
I would maybe go to Human Resources and just let them know your situation. They are there to help and protect you!
Emily Parris thank you for your advice! I'll definitely be checking it out!
Thanks for sharing! It definitely can be hard to let people know about your illness. You are beautiful btw!❤️❤️
Thank you! I have a super rare autoimmune disease called Bechets disease. And I have people ask me if it’s like aids and contagious. It drives me insane!
Whitnei Walz I have behcets also! Never had someone ask me if it’s contagious, that would drive me crazy also
Remi Vincent when were you diagnosed? I was diagnosed at 14 after dealing with doctors not knowing for 7 years. Now 23 and mostly in remission
Whitnei Walz I was actually diagnosed on my 18th birthday😂, which was almost 2 years ago. I think I probably have had it longer but went unnoticed as just other health problems. I’m happy you’re mostly in remission! For me I feel like I’ll never be remission, cause I’m currently going to school and I feel like I never get enough sleep and I’m always stressed out. I know one day, I’ll get there though
Remi Vincent I know how that feels. I finally went off doctor prescribed medication in 2014/early 2015 and moved to Colorado where marijuana is legalized. And went to strictly smoking and ingesting cannabis and I put myself in remission and have been ever since😍
I have anatoamune disease two
About The Buteyko Method: A Summary of the Pathophysiology of Chronic Hyperventilation by Ira Packman, M.D.
The fact that chronic hyperventilation (CHV) has an effect on the lungs is easily understood and explained. The systemic (whole body) effects however, are physically and physiologically distant from the lungs and therefore are more difficult to understand. The multi-system, wide spread systemic ramifications of chronic hyperventilation are numerous.
These effects are all caused by the initial effect of pulmonary hypocapnia (low CO2) which causes spasm of the airways leading to asthma. The loss of CO2 from the lung on a long term basis causes a compensatory response throughout the body. This concept is called homeostasis which means that the body is always trying to stay in balance and return to its most comfortable state.
A partial list of homeostatic controls would include:
- Constant body temperature
- Constant whole body water volume
- Glucose levels
- Mineral balance including sodium, potassium, magnesium, zinc etc.
- Acid base balance (Ph control)
The acid base/Ph control mechanisms are very sensitive and closely controlled, because the Ph of the body affects the function of every body system. It is this system that is activated when patients chronically hyperventilate.
Understanding this concept, we can follow what happens with CHV.
- The lungs continuously blow off too much CO2 causing local pulmonary hypocapnia (low CO2) and arterial hypocapnia.
- The arterial hypocapnia immediately changes the Ph of the circulating blood causing an increase in the Ph (alkalosis).
- The increase in the Ph causes a decrease in the delivery of Oxygen to all the bodies tissues due to the Bohr Effect (In an alkalotic environment, the hemoglobin molecules in the red cells hold onto the oxygen molecules more tightly and will not release the O2 to the tissues).
- The kidneys see the alkalosis/Ph change and know that it must correct the bodies Ph back towards neutral (neutral Ph is a Ph of 7.40). Once CHV becomes long standing the kidneys response becomes an ongoing process in which the kidneys excrete bicarbonate in an attempt to correct the alkalosis which was created by the CHV.
- The net result is a depletion of the bicarbonate buffers due to continuous over excretion of bicarbonate which also causes the loss of electrolytes including magnesium and phosphorous which are lost with the bicarbonate.
- The loss of phosphorous also decreases the production of ATP (adenosine tri-phosphate) and ADP which are the bodies’ main source of energy.
- This then causes a decrease in the functioning of many organs including the muscles, heart, lungs, bone marrow, immune system and liver.
- These functional changes, coupled with the arterial spasm that occurs directly due to the low CO2 levels in the blood, are expressed in the long term as muscle fatigue, hypertension due to arterial spasm, decrease in the oxygenation of the brain, migraine headaches due to arterial spasm, spasm of the arteries supplying the gut, decrease brain function with memory changes, alterations in the production of proteins and metabolism of lipids in the liver causing elevated cholesterol.
This is just a partial list of the systems, organs and bodily functions which are affected by CHV and the subsequent low CO2 levels in the lungs and blood.
This concept regarding the origins and causes of these diseases is very radically different from the way medical schools teach about these diseases. It is revolutionary and may be too simple for many academicians to accept or understand.
Omg thank you! In the last year I have been diagnosed with PCOS, endometriosis and fibromyalgia and I honestly just feel so overwhelmed and like I have no idea how to deal and process everything.
I have PCOS as well & a lot of people don't really understand what that's like. One of my good friends has endometriosis and people always tell her "Oh so it's like period cramps?" & she gets frustrated too. It is definitely overwhelming at times & that's why having a strong immune system is so important
Family will want what is best for you? I quote "I know cripples and blind people who had a great career and managed to have a family, why can't you?" "My friend has chronic illness and she wrote 10 books and raised 3 children, what have you done?" and "why should I help you to get a diagnosis? if you say it can lead to cancer, you should just get the cheaper chemo like everybody else, why do you always want special treatment?". SOME family will want what is best for you...
Yup... I think it goes without saying that each family is different and that I wasn't speaking for every situation.
With my family having to take me places now that I have a doctor and I'm trying to get benefits but had to get a lawyer my mom is telling me that I owe her and make sure I give something to the people who've helped me. But I don't have anything yet I can't work a normal job I don't drive I went to school and owe them. But yet my family doesn't want me to move and be with the man I love that I met at school and been friends with for 7years. I just want to be able to have a family of my own which for a very long time I thought I couldn't have until I saw people with my condition able to have children and have a full life
Do chronic migraines count as a chronic illness? I feel like they really affect my life and they are are so incredibly misunderstood :/
YES! 100%
A chronic illness is anything longer than 6 months. So there are a lot of conditions that regular people don't consider chronic. It's so annoying, like some people don't consider eds one but they consider Ms one because it's so highly advocated for
Thank you so so much! I definitely makes me feel less crazy hearing that!
Oh yes dear chronic migraines are life consuming. I suffer with multiple types of chronic migraines.
Yes because they are debilitating and can cause other things to go wrong
For more information about the Buteyko method you can read the following 2 articles:
- Kazarinov V.A. (1990) "The biochemical basis of KP Buteyko's theory of the diseases of deep respiration"
- V.K. Buteyko, M.M. Buteyko (2005) “The Buteyko theory about a key role of breathing for human health: scientific introduction to the Buteyko therapy for experts”
New sub to your vlogs
I too am a warrior or chronic illness and your videos make me feel less alone in the battles
this video helped me so much! thank you!:)))
I recently graduated college and have been out of work for two years due to gastro problems. What do I tell my classmates and former teachers? It’s hard to answer a, “hows everything been?” question.
This is a question I would like an answer for as well. I almost immediately end up sharing that I've had health problems, because it's literally been the focus of my life for two years. I have nothing else to say. I have been in too much pain to complete any big projects except for the project of being in less pain. I'm finally doing something now but I have a two year gap and I don't want to lie to people by making up some story. I even tried "I've just been taking it easy," but that gave people the wrong impression too. Anyone out there have ideas?
Source: Jill McGowan, Education and training consultant in Asthma Management. Thorax vol 58, suppl iii, page 28, December 2003
Background: Anecdotal evidence suggests that the Buteyko Institute Method of Breathing Retraining can reduce asthma symptoms, medication and improve quality of life. This study aimed to determine the effectiveness of this method for individuals being treated for asthma.
Methods: 600 adult patients aged 18-69 years diagnosed and currently treated asthma with a symptom score > 1 per day was recruited to a randomized blinded controlled trial. This tested active Buteyko (Group 1) with asthma nurse education (Group 2) and continued medication control (Group 3). The main outcome measures were quality of life (SF36), activity, asthma symptoms, and medication reduction. Asthma symptoms and activity were measured by diary card scoring from 0-3.
Results: of all who commenced study, data were available on 500 after 6 months, 384 after 12 months, and 384 after 24 months.
Asthma Symptoms: Buteyko Group - decreased by 98%, 6 months and remained same at 12 months - Placebo and Control Groups - no significant change
Reliever Medication: Buteyko Group - decreased by 98%, 6 months, and remained same at 12 months - Placebo and Control Groups - no significant change
Preventer Medication: Buteyko Group - decreased by 92%, 6 months and remained same 12 months - Placebo and Control Groups - no significant change
Reliever Oral Preparations: Buteyko Group - decreased by 100%, 6 months and remained same at 12 months - Placebo and Control Groups - no significant change
Preventer Oral Preparations: Buteyko Group - decreased by 96%, 6 months and remained same at 12 months - Placebo and Control Groups - no significant change
Instance of cold or viral infection: Buteyko Group - decreased by 20%, 6 months and remained same at 12 months - Placebo and Control Groups - no significant change
The participants involved in this study all experienced significant improvement in asthma with a reduction in symptom, medication and improvement in quality of life. This was maintained over the duration of the study and is similar to the results of Brisbane Study (Bowler S 1998 BMU) and unpublished study by Dr G Spence G.P. in Shettleston Health Centre (Spence. G.).
I LOVE YOU SO MUCH EMILY!!!
When a person has a chronic illness and works no one cares. If you can't work the disbelief and humiliation begins...
I have a service dog and I have literally been denied jobs because of it. She doesn’t affect my ability to work. I can stand at a cash register like ugh it’s so annoying.
Disability services are amazing at college btw!
I'm pretty sure it's against the law to deny someone employment because of a disability, with that being said I could see why my work wouldn't recommend someone to apply if they had a service dog. I don't know your job experience, but I am a server and there's no way it would be safe for the staff or the dog for that matter to be in the restaurant. I would imagine that in your daily life people are always coming up asking to pet your dog though huh!
I love your videos. I feel like we'd be good friends
The list of the deep breathing diseases curable with Buteyko Method:
Preasthma
respiratory allergosis
polyvalent allergia
laryngospasm (loss of the voice)
food allergy
drug allergy
pseudocroup
pharynritis
laryngitis
tracheitis
Asthmatoid bronchitis
Bronchial asthma
CNDD (chronic non-specific pulmonic diseases)
chronic bronchitis
obstructive bronchitis
chronic pneumonia
brochiectatic disease
pneumosclerosis
pulmonary emphysema
silicisis, anthracosis etc.
Chronic rhinitis
Vasomotor rhinitis
Frontal sinusitis metopantritis
Maxillary sinusitis
Sinusitis
Adenoiditis
Polyposis
Chronic rhinosinusopathy
Pollinosis (hay fever)
Quincke's edema
Urticaria (hives, nettle rash)
Eczema (letter):
neurodermite
psoriasis
diathesis
Vetiligo
ichthyosis (fishskin disease, xeroderma, alligatorskin disease)
juvenile acne (comedones, blackheads)
Raynaud's disease (vasospasm of the upper limbs)
Obliterating endarterilitis
Varicosis (varix)
Thrombophlebitis
Hemorrhoids (piles)
Hypotension (hypotony)
Hypertension (hypertony, high arterial blood pressure)
Vegetovascular dystonia (VVD)
Vitium coridis congentium (congenital heart diseases)
Articular rheumatism
Rheumatic heart diseases
Diencephalic syndrome
Heart ischemia
Chronic heart ischemia (CHI)
stenocardia
posthmyocardial ifarction cardiosclerosis
Breaches of cardiac rhythm
tachycardia (tachyrhythmia, tachysystole)
extrasystole
paroxismal tachycardia
cilinary arhythmia (cardiac fibrillation)
Generalized atherosclerosis
Arachoiditis (posttraumatic, influenzal etc.)
Postinsultus states (conditions)
paralysis (palsy)
paresis
Parkinsonism (initial form)
Hypothyreosis
Hyperthyreoidism
Basedow's disease
Diabetes mellitus
Breaches of menstrual cycle
Toxicosis of pregnancy (disgravidism)
Pathologic climacterium(menopause)
Cervical erosion
Fibromyomes
Fibrotic mastopathy
Sterility
Impotency
Menacing abortions
Radiculitis (nerve root syndrome)
Osteochondrosis
Metabolic polyarthrilits
Rheumatoid polyarthritis
Dupuytren's syndrome (tendon osteal contracture)
Cout (podagra)
Pyelonephritis
Glomerulonephritis
Nycturia (bed wetting)
Cystitis
Urolithiasis
Obesity of any
Lipomatosis
Chronic gastritis
Chronic cholecystitis
Biliferous tracts dyskinesia
Chronic pancreatitis
Cholelitniasis
Duodendal ulcer
Spastic colis
Peptic uncler
Multiple sclerosis
Epilepsy (spastic syndrome)
Schizophrenia (at the initial stage)
Collagenoses (dermatomyitis)
Glaucoma
Cataract (a)
Strabismus (heterotropia)
Hypermetropia (farsightedness)
Radiation sickness
Acute hepatitis
Chronic hepatitis
Cirrhosis of the liver
HIV (human immunodeficiency virus)
AIDS (acquired immune deficiency syndrome)
thank you
Please never say the family is the least judgmental. You don't know that.
You lost me with the assumption that family will def be supportive. Not. At. All!
I hope you stayed long enough before commenting this, to see that I cover what to do if family isn't supportive. Thank you for your feedback. I will offer some for you as well, we are all in this community together doing the best we can. Keep that in mind when you leave rude comments.