What You Should Know about Living with a Chronic Illness | Invisible Illness
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- čas přidán 11. 06. 2024
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Today I'm opening up and sharing more about my multiple sclerosis diagnosis and how that disease has affected my life in hopes that it will normalize invisible illness and Disability and help others dealing with something similar feel less alone. :)
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I have an invisible illness and exhaustion is one of the symptoms. I find it really embarrassing if I’m on public transport and I need to sit down but because I ‘look fit and healthy’ I find it hard to ask or when someone elderly needs a seat if I can’t stand for them (and I do if I’m not having a flare up) then people look at me like I’m the devil. Sometimes I fake a limp or something as I get off the bus and I see people thinking ‘oh, ok she is disabled’. I shouldn’t have to do that but the judgement if I don’t is worse.
I've got an invisible illness too. You asked for advice on how to respond when people ask how you're doing. I have learned to cater my response to whoever is asking. 100% open with doctors and the people I'm closest with. With other people, unless I actively need help in the moment or am struggling to walk, it's usually something of "I'm taking it day by day, I'm doing ok, or I'm hanging in there". Also if it's not someone you're really close with or someone who just doesn't get it, it's a shorter response. If the fatigue/other symptoms are horrible that day, it's I'm fine. No need to use more energy on people who will never understand. You also mentioned feeling like you don't show up enough for friends and family. Something I read recently is that the moon shows up every night, but it's not always full. And the ocean is always there, but sometimes the tide is low or high. So show up when you can and how you can. The people that actually matter will adjust to the new normal and accept you for who you are.
Such wisdom and so helpful. You’ve given words to how I feel I need to handle my husband’s terminal cancer. Thank you Sarah.
I love the imagery of the moon and ocean... so beautiful and helpful ❤
Thank you for this…I deal with chronic pain and a chronic condition as well
@@boiseclarks my thoughts are with you and your husband 🌷
@LeanneClark sending thoughts and prayers for all the graces you need.
I have an invisible illness - Fibromyalgia and every day is different. Having a flare up at the moment and on the outside I look “fine”. It sucks. People need to be kind to others regardless and hopefully the world will be better for invisible illness sufferers and all. Sending love and strength ❤
I have many mental health problems, on top of physical illnesses; but worst is never ever being able to wake up feeling rested. My mornings are sooooooo difficult. I feel physically worse than when I went to bed, so my mental state is awful as well. Once that is over - can take up to 3 hours for the darkness to disappear, the body to adjust to being awake etc., I then face the reality of all the losses in my life. Jobs, income, travel opportunities, relationships, friendships, hobbies etc. but then I go out and I'm surrounded by stray cats here in Istanbul, and I am the happiest human on the planet. It is pure joy being with them, taking care of them, giving them love. And LOVE is everything. Be kind to yourself and love as much as you can. 🥰
Yes! One of the worst symptoms for me with my auto-immune is the fatigue! And how quickly it come on. One minute or one day you’re fine, and the next you’re so tired it’s hard work just lifting your arm! And then people tell you “it’s this time of the year” or “yes, but everyone is tired after the stress of covid”. Nobody seems to understand.
I totally feel this also. People tell me "it's that time of the year" but how would they know?. I'm in pain more than most people around me. I also have auto immune disease. I feel sad and other people are living life around me.😢😪
so relate to the isolation and feeling invisible. I'll see a mate and they're like "what have you been up to lately?" even though they know I have cfs, it's not that I feel bitter for them for not knowing that I spend all day doing literally nothing ! but it's more just feeling completely misunderstood. like people know I'm sick but they cant actually comprehend what that actually looks like day to day. so relate to feeling like you can't really met people where you're actually at and feeling like it lacks that transparency but then not wanting to show too much. bless you for sharing this. 🙏
No for me it is not sending negative energy, it is teaching us about health, about opening up, trust us as youtube community and if anyone is sending any sort of negativity then delete those messages. We are all here for you and for each other ❤
Well said! 👏🏻
🙏💕
🙌 yes
I hear every word you say!! You hit the issue perfectly!!After pushing myself to work through the horrific pain, fatigue and dizziness, I finally had to apply for disability as I could no longer work even an hour most days. It’s so unpredictable. Some days, I can walk a mile or two. Sometimes, I don’t have enough energy to eat, drink or get to the bathroom. You’re right about who to tell. My family, which have been great, don’t even understand. Only my husband and kids see the “real” me. I finally collapsed and ended up in the hospital whenever I tried to work. I’m now on disability, which is very embarrassing to me. I, like you, look perfectly healthy most of the time. I also try to be impeccably groomed so as not to make people feel uncomfortable, but when I go to the doctor, I now never wear makeup and leave my hair uncombed just so they see what is going on. Their attitudes change based on how I look! Hang in there-you’ve made me feel less alone.
Thank you, thank you for this video. After over a decade of specialists, symptoms, and frustration, I was finally diagnosed with Lupus last December. Everything you talked about resonated so much with me. You conveyed ALL of the things that I am currently feeling so much better than I ever could. I will be sharing this video with my family, friends, as well as the community of women I work with through social media. We are all the mothers and caregivers of adult children with autism and comorbid disabilities. Every single one of us now lives with a chronic illness. I don't view this video as negative in any way. It is a reality too many of us live with and is validating and very helpful. I hope you consider making this topic into a series. I actually started pursuing minimalism a few years ago to help manage my anxiety, conserve my energy, as an act of self care, and in preparation for what the future may bring.
I also have a neurodegenerative disease. You're so right about how healthy people don't understand fatigue. I got through to a few people in my life by looking them dead in the eyes and describing it like this: It is fatigue that is so heavy, I feel literally paralyzed. Literally. My husband would pick me up off of the floor and put me in bed. I was unable to correct the position of my body or wipe the hair out of my face. I was so tired that the effort to move my eyes in my skull felt demanding. Breathing feels exhausting. --And the brain fog was so severe that I couldn't read or write for months. I forgot how to tie my shoes, got lost in my own house, and didn't know what my dog was or why he was in my house. I'm doing infinitely better now thanks to Cleveland Clinic!!
I'm also paralyzed with fatigue,x
I think your feedback is true for all suffers of chronic illness. People really don’t get the struggle unless you are having an issue in the moment. They stop wanting to ask you how are you doing because they are afraid of the response. I too have started to tailor my response to my audience due to this fact. You definitely feel less genuine but I feel like I scare people due to the fact that my condition appears on the surface to be no problem.. to them.. because yes I’m able to work and appear to have energy but when I go home I can’t do the thing I use to I’m exhausted.. this video validates how isolated people with chronic illnesses feel.. I like how you stated we feel left out or falling behind …. This is so true… with my condition I’m not able to eat solid food and this has been a big issue for me. Some social settings revolve around sharing food and I not only miss this but feel I’m missing out on the people connections involved with eating a meal. I have tried to eat and talk during a meal and people tell me they feel awkward due to me not eating so I usually step away or do not socialize at all. Thank you I found your video very helpful.. I saw it at the right time.. I needed it 😊
Hey there, greetings from Poland. I'm leaving this comment here just to let you know that this video has made me grateful for all the energy and health that I have to take care of my home on daily basis. Your talk has made me more appreciative. Instead of complaining about my chores, now I'm thankful that I can actually perform them without any health problems. Thank you and I'm sending you lost of positive, uplifting and healing energy 💙
I really appreciate you doing this video and sharing your story. You’re not complaining. You’re living with an illness and it’s important to share, it’s important for all of us to share our experiences so that we can learn from one another and lift one another up. Everyone is different. Everyone’s health journey is different and the only thing that we can do is to do our very best, listen to our doctor and listen to our body. I just want to send you love and light and to everyone else who is living with a chronic illness, I love you ❤️
Having an invisible disability and being undiagnosed sucks so much
My husband suffers with chronic pain. Some days are better than others. People don’t always understand
. It took me a long time to admit/explain this to my closest friends. I felt better once they knew. Sometimes we can’t accept an invitation because we don’t know how he’ll feel. It’s been a relief to know people understand
Thank you for this wonderful video!! I have been living with ME/CFS for the past seven years and you took the thoughts right out of my head!! (You definitely didn’t take the words right out of my mouth, as there’s no way I could be as articulate as you!!) I wish you all the peace, happiness, love, strength, and health in the world! 😘
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
My chronic condition is very different from yours, but it does result in periods of time when I'm in constant pain. I also struggle with being authentic about that, using a cane in public, allowing people to lift/carry things for me, etc. It's hard to know that some of my favorite activities will always be off limits; I'll never run again, for example. Then there's the whole issue of pain medication, which ones work for me, avoiding addiction, etc. Anyway, thank you so much for making this video and opening up the conversation. Wishing you a "good MS" day. ❤
I was born with a brain tumor. It has caused strabismus. It has caused surgeries of being crossed eyed 3 times. Still my eyes to still not be straight. Challenges with Crohn’s disease. I just had another brain tumor. I am recovering from surgery as I write this. I have never had been crying about my illnesses. I just go with the flow. I guess something that has helped was a beautiful loving mom. She knew how much I struggled in life. Now my strength comes from the God. God Bless You and , stay strong. We all go through challenges. It sucks. 😊
Thanks so much for this video. I also live with multiple invisible chronic illnesses. I almost cried at times as i recognised what I live everyday in what you are describing. It was an amazing video thank you again
The thing that annoys me with having an invisible illness is that people in general, who don`t understand these kind of illnesses, don't understand that our struggles are not just about pain as they understand it, but so many other things like fatigue, muscle spasms, etc...
I get it. I've lived with MS for 38 years so far. It has helped so much to be part of a support group - we still connect even though we live on opposite coasts. So helpful to talk with others who understand.
I cried while watching this. You put into words all the struggles I, and many others have. I suffer from CPTSD and have been diagnosed as 'high functioning ', which basically means I'm a fricken good actress at playing the "I'm fine" persona. I tried being honest with a friend about my struggles and why I had to cancel our get together, it was a disaster. Pushed me right back into the I'm fine person. It is so so hard to be honest, for all the reasons you pointed out, so I am truly grateful for you having the courage to make and share this video. Thank you so much.💚
Thank you for this comment. I'm currently going through losing a friend because of years of invalidating me and my symptoms. That feeling of trying to be honest with friends about why I need to go home, or cancel, etc. I remind myself true friends would not care or judge, but after years of trying to be honest and getting met with anger or annoyance, it's hard not to not let it hurt. Thank you for your comment and your courage as well.
@officersonic3014 Thank you. Much love to you, just know you are making the right decision for you. It hurts, but it gets better and you will feel freer and less burdened. It's hard trying to be what someone else wants, exhausting in fact. You take care of you. 💕
As the parent of a child with complex, mostly invisible medical diagnoses, this video is very validating. I can relate to so much of what you shared. Thank you for making this video!
Thank you for this video. I was shaking my head yes through the whole thing. I have MS and it’s hard to let people really know how you feel. I know they look at me (not all people) and think nothing is wrong with me. Praying for you. ❤
You are beautiful and so well spoken. Thank you for being vulnerable and sharing your truth. I do not have a chronic illness but I’ve been following you for a “Slice of Light” in my life, and my heart hurts for you since I learned about your diagnosis. Hugs to you and Andy! I’m so glad you have each other! 🫶🏻
Thank you for making this episode. I have a few rare diseases that are invisible illnesses, while I don't have MS I identify with so much of my this. Its honestly nice to hear the struggles so I know I'm not alone and I'm not the only one having these thoughts. I've been disabled for 3 years and the grief and adjustment are real. So is the struggle with getting through applying with disability and seeing doctors, paying for meds and everything else.
Much love to you friend. Thanks for sharing your light. 💕
Wow, if I could articulate as well as you, I almost would say word for word what you just said. I have ME/CFS, POTS and some other stuff, my life has completely changed the last couple of years and I’m now mostly housebound. I really hate when people say things like “I’m tired too.” They have no idea of the profound exhaustion caused by our conditions and the frustration of not being able to do the things we once could.
I’m so sorry you have to deal with this and I want to let you know I’m hearing you and I understand. I really appreciate you making this video.
Oh sweet Elin- I am so sorry you are are having to go through this horrific disease. I will be praying 🙏 for complete healing.
Thank you so much for opening up to the invisible sides of chronic illnesses. Makes me feel less alone. Pain and fatigue are very real and invasive. I too struggle with when to say what about my illness and symptoms. I tend to ask too much of myself, but paying the price later. Also I sometimes feel quilty for being a wife and mother with disabilities. It affects not only me but everyone around me. That's hard. Specially for my husband, although he doesn't want to hear me say that I sometimes feel like a burden. Also, every day is different and you keep adjusting to how it is going. On a more positive note, I am very thankful for the love and help around me. Sleeping 8 hours at least, trying to find a balance between resting and activities, learning to say no to things and people have helped me. Not perfect at it myself all the time, but I am trying. Sending you lots of love and light. Thanks again for your videos, you are in my thoughts and prayers. ❤️
This resonated with me SO much. I have isolated myself over the years from friends because it eventually gets exhausted hiding how I feel 😢 (I have chronic pain from severe scoliosis and epilepsy). Whenever I have flares I too feel so so guilty or a failure for not being able to do as much as I used to or do things I want for people but physically can’t! Im trying to have more compassion for myself and not beat myself up 💖 Thank you for this video
This video made me feel way less isolated in this illness. I feel like this video explains all the things I have a hard time telling family and friends. Thank you ❤
I really appreciate the honesty, I believe that truth and honesty are important, talking about frustration, sadness and just expressing painful feelings is healing. Thank you for sharing ❤
Something that helped me with talking to others about health is have your people you talk to and who you’re authentic with so that way when someone asks who you wouldn’t really go into detail with, know, you already have your people and to have grace for yourself. You don’t need to share and give 100% of an answer to every single person. That will wear you out. Be authentic to the people who are going to hear you and give back to you in a way that lets you know you’re heard.
Great idea! I'll share it with my husband
My husband had a stroke 3 1/2 years ago. I am his caregiver 24/7. His illness is both mental and very physical. People are always very kind to us when we go, but it's tough always being the conspicuous people. Thank you for providing a platform where we can talk about struggles and hard-core realities. Please, use your channel and your audience as an outlet as much as you need to or want to. It's about being a real community of real people.
As someone who struggles with a couple of chronic issues that have completely changed my life, I really appreciate your message. Life gets tough and we struggle. Years after being diagnosed, I still can't seem to completely accept it. I believe there is wisdom in me and that one day I will be more at peace with it. Many warm wishes from another ex-academic :). Thank you for sharing.
Thank you for making the video, incredibly encouraging! I have Ataxia, which very similar to what Mutiple Sclerosis is. It is scary and like you said lonely unfortunately. It's refreshing to see someone authentically talk about these difficult issues.
Thank you so much for sharing. I’m sure it was tough to do so. I’m glad your husband is so incredibly supportive. That is priceless. Sending you all the love and strength. ❤️❤️🤗
Thank you, you voiced so much of how I feel and after twenty years of pain from FM, CF, depression plus other invisible illnesses I still am struggling. You have a lovely voice and manor, it was very comforting to hear your thoughts. I wish you well with your illnesses, I look forward to hearing more from you. Many thanks.❤❤
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…
You are amazing and probably don't realize the very deep comforting and supporting impact you have on so many. Thank you!
This is so helpful. I kept thinking about how we don’t really know what anyone is dealing with at any given time and hearing your story helps me to remember to simply be kind and patient and helpful to everyone I come across. Thanks for being so transparent. Appreciate you!
Appreciate your honesty. Just know you are in my prayers. I relate to many of your struggles. My faith in Jesus is my strength. Thank you for making this video.
this is an extremely good video....there is not a single bit of negativity. it is full of genuine personal experiences which you share with us and we fully appreciate it ....
Thank you for your vulnerability. I'm a recovered Lyme warrior. I've experienced everything you mentioned here. People need to know they are not alone and you just beautifully outlined it all.
I live with MS, too, and this whole post is speaking MY truth! Thank you so much for your honesty when some of us need it the most!❤
I have an invisible illness and this video resonates with me so much. Even though I have a totally different condition, it affects my every waking moment in some way or another. One of the hardest parts for me is accepting that I have this after being not long ago a fit and active person, and accepting that there is nothing medically currently that can be done about it that hasn't been done, and unless some new treatment comes out there will continue to be nothing, and so accepting that and that the symptoms I get will most likely stay the same indefinitely.
This was a brave thing for you to put out and I didn't find it negative at all but uplifting. I was 52 when I was diagnosed with Multiple Myeloma, a blood cancer. Honestly, I was shocked because I had always been so health conscious. I have been in and out of treatment for 17 years and currently am facing another relapse. I try to stay positive but there are times when I just get depressed and I just sit with it. My family has been a great support especially when I went thru a SCT( stem cell transplant). The fatigue is/was a real thing and I'd say be kind to yourself and do what you need to do even if it means disappointing someone else. Take care and thanks for this video.
Elin, yes and amen, and thank you. Thank you for sharing your story on CZcams. I have multiple Autoimmune diseases and conditions that are invisible. I am 55 years old. I was diagnosed with Type 1 Diabetes as an 11 month old. I grew up with so many "Diabetes Police" telling me (and my parents) what to do / not to do. I am so grateful that my parents taught me how to deal with people's uninvited comments and how to keep a positive attitude through it all.
I teared up several times as I listened to your video, but also laughed at other times, and shook my head in agreement throughout.
Thank you for being real and sharing your experiences on here. Invisible diseases are tough, but it does help knowing that we are not alone in this journey through life.
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I want to validate you and how you feel. All very normal and you are not alone! I started having similar symptoms when I was young and I'm 61 now. I went through all the tests for ms and they couldn't come to a conclusive diagnosis. They said I probably had something that they just didn't know much about yet and couldn't test for. I have spent my life with all kinds of random symptoms, some similar to yours. Fatigue being a running thread the whole time. It's been so unbearable at times. A component of my personal struggle is that my husband forgets when I look ok or don't say anything! I believe he is on the spectrum. I haven't been as lucky as you to have friends that understand or even want to know more and I am exhausted at trying to get them to have a better understanding. So count yourself lucky in that department. I cried at the end of your vlog about your future not being what you had imagined. That happened to me. Please share anytime, I imagine that helps and I will always support you. I hope more help comes for people with diseases like ms. I hope your future is good and bright. I will think of you when I pray today🙏
Thanks for sharing. I'm 58 and previously doctors just said things like, it sounds like you've been very busy, or it sounds like you're depressed. But about 2 years ago, I found a family practice where the PAs and the NP really listened and did further testing. But now it's like I'm finally even able to say to myself, no it's not in your head, I have 2 autoimmune disorders, in addition to the allergy problems. Sometimes I wish I would just be healed; I guess I'm still grieving. And looking for what possibilities are still there.
My mom has had MS ever since I was a kid. It is so eye-opening for someone like me watching this, this really helps me understand her better. Thank you for sharing this! One thing I might add is that for her, it was accompanied by clinical depression, and that caused her to be even more stressed which in turn caused her MS to get worse over the years. Fortunately, eventually, we were able to diagnose that and take the depression and consequently, the MS under control and sort of stabilize her condition.
This came at a perfect time for me today. I have Multiple Sclerosis as well. Today was hard!! Thank you for your honesty. The future can be scary for me. I have a special needs kid and not sure what I will be able to do etc. Hearing what we all think is encouraging that others are out there living this life too
You are an amazing, wonderful, courageous person and such an inspiration! Thank you so much for sharing your experiences and feelings 💕. I am struggling with depression and a lot of what you say gives me new insight to my own situation.
Hi Evelyn, I experienced depression at 3 different times in my life, it can be scary when the inner and outer don't match. Just know that your feelings matter and learn to make your body well, even if its small things..whatever you do will help that tiny shifts to ultimately get a grounding and feel the release happen, I seemed to have been under nourished so the upside is that I learnt so much about food and nutrition, and also really disloguing with myself in a journal so at least I am clear and get to express and process daily thoughts emotions. You are not alone and you are loved my dear. Thank you for your comment .it helps me too. Lia
Ya, I have CFS and people tell me their tired all the time. I say you should get checked out!
Dear Elin, l am grateful for all your videos 🙏 I learned so much from you. Sending hugs 🌳
You are not alone! Since the birth of my daughter twenty years ago I have suffered from heavy depression and anxiety … another invisible illness. A couple of years ago I decided to live a life without permanent medication (an option you don‘t have). What helps me in the dark moments that can last for days or weeks is a breathing technique from Yoga and autogenic training to calm down. I also hold on to the thought that better moments will come ( sort of a Mantra). And I allow sadness and anger about this illness to be a part of my life. In good moments I can enjoy life so much more … it‘s precious! All the best for you from Germany!
You are sooo wonderful to do this for those of us who are suffering the same. I’m in tears knowing I’m not alone in dealing with people’s reactions-especially family.
It's unbelievable, really. From coworkers to "friends," I've heard things that have turned me into a different person altogether. Even doctors make baffling comments. I can't figure it.
thank you for sharing this.. I have multiple chronic invisible illnesses.. I deal with it all alone.. appointments, procedures, tests.. Its hard.. I broke down today and decided to look up videos to see if anyone can relate and found this.. so thank you. it helps to not feel so alone
Thank you for sharing this! You never know who is watching that desperately needs to hear this🫶🏻
I struggle with chronic gut issues (small intestinal bacterial overgrowth, gastroeshopageal reflux disease, and IBS) - some of those are supposed to be treatable, but the treatments don’t work for me. It really impacts my life, I can’t eat many foods, I often have stomach and joint pain, fatigue, I get an upset stomach easily. It really restricts my life. Thank you for making this video. Everything really resonated with me - especially just struggling with the physical symptoms, the sense of isolation and loss from what my life could have been without those issues
Thank you for sharing, I am so sorry to hear about your illness. I was diagnosed with an invisible illness 7 years ago. I am older than you, in a different phase of life, so I recognise that my situation is different, But still I recognise everything you said. I have stopped working, and am now doing a PhD in art history in my own time. (I heard your story and I think you were very wise to choose you over an unwanted career path.) I need to work towards something, and this I can do - as long as it is in my own time - and it gives me joy. I have good days and bad days, good weeks and bad weeks.
The fatigue is the most disabling for me. And honestly, people just cannot understand it. A friend once asked me what that was really like, he really wanted to know. I said: "You know when you were at a party, it's late, you've just come home and all you want to do is get to bed? Sometimes that's how I feel when I wake up, and then I still have to get through the whole day." I could tell it registered with him. But even that was temporary. People just can't experience what you experience. My advice is to only talk to people about it if they ask, or at moments when you really want to tell them. When people specifically ask me how it is, I say in an airy tone: "It's a challenge." If they want to know more, they can ask, but they usually don't. And why would they? Everyone is living their own life. And please, just ignore the unsolicited advice, just shrug it off. It very probably comes from a place of love, as misguided as it is.
Looking back, I can say that it has been a challenge, but my illness has also forced me to choose what I do and what I don't or even won't do. It's kind of a permission slip to always ask: 'does this spark joy for me?', or 'is this realistic for me?' Also, I used to be very serious about life, relationships etc, and it seems to me that you are too. I'd say: lighten up. People go on with their lives whatever you do, and some (perhaps many) will disappear. A disability means change, and people either change with you or they don't. The ones that remain are your true friends. I am glad that (like me) you have a great husband. It is something he has to come to terms with too - both your lives have changed a lot.
The last thing I want to say is something that you probably cannot understand, but in a few years' time you may. And that is that I am happier now than I used to be. I have a different outlook on life, and it is a better one for me. As tired as I often am, I enjoy life more. Can't explain it, but it is true. I hope this may come true for you too. But whatever happens, this is a radical life changer that you have to deal with on a daily basis. I am so sorry for that.
I am wishing you the best, and am sending you love and light!
Hi Elin. Thanks for sharing. I am in week 4 of a neuroplasticity program called DNRS that is helping me overcome chronic health problems (not MS). From day 1 I saw a difference in my symptoms, and I previously was the world's biggest skeptic! I would be doing you a disservice not to tell you about this miracle therapy. Even if I had MS, I would dothis program. There is nothing to lose.
I’m listening to you describe EXACTLY how I feel and the symptoms I experience too. The fatigue, the always dizzy to varying degrees. The fluctuating vision issues and symptoms throughout my body like numbness and tingling. Yep I totally get it and I feel very similar. You have described what I endure daily better than anyone I’ve listened to. I feel anxious about it too and mainly push that away and just go about my life best I can. Thank you and take care! 🌻
You take care too! Thanks for sharing 🌼
I'm not dealing with a chronic illness, but the struggles you have described relating to others or they relating to you, definitely mimic living life with grief. Grief is invisible as well and like living day to day with chronic illness, most people can't understand if they haven't experienced it. I think initially we try to make it easier on others but after awhile that just gets very exhausting. In the end, after 6 years, I've learned that when we are carrying the weight of chronic life challenge on our shoulders, we have to learn to put ourself first, feel the feelings that come with it and share those feelings when we need to. The people who can support us will stick and the ones who can't will fade away. And it's ALL okay. Kudos to your Andy. He sounds amazing and you are definitely blessed to have him by your side. I miss and grieve "my Andy" every single day. I see all of the chronic sufferers surrounded by healing white light.
Thank you from the bottom of my heart. I was very touch by your words, I am having the sale toughts that you. I am facing cancer third stage and all that you commented is the same I am dealing with family and people around me, I do not need unwanted advise. I really appreciate you shared your story. As you said this has helped me to know I am not the only who think in these sence. I wish you all the best. Best regards from México.
Thank you Elin, one of the many reasons I love your videos. I have a different chronic illness than yours but like you it has significantly changed my life, what I can & can’t do. It’s why I’m refining my minimalism further because it helps me cope. Good for you for making this video!!!
Thank you for sharing your story and opening up a space of healing through these difficult processes. This video was so validating. My husband, Andy, had a stroke last year. The event devastated us in so many ways. It’s been a long road of recovery, processing and going to second and third opinions waiting on a fourth. Navigating the medical system is so difficult and sometimes I feel like I’m the only one doing it wrong. I love your videos and I appreciate you being raw and honest with your journey. I don’t feel so alone working through my loved one’s illness. Thank you so much for sharing, this video brought tears of relief. Your videos are so healing.
Thank you for sharing, ist brave and thoughtfull, remindes us all too be more supportive and respectfull towards people who struggle with any kind of illness ❤ ❤👏👏👏🤲
I wish I could sit down and talk to you about this. I too feel so alone and that no one will ever get it and I don’t know how to make them understand. So I isolate. God Bless you for your courage!!
Thanks for talking about invisible chronic diseases! It is soo valuable that you talk about your personal, but general struggles that come along a chronic illness! People, who are not affected simply can not understand. But they can accept and work on their reactions and behaviour and get educated to understand and support. Even though I am kind of able to deliver things at work and can hide it rather well, I still feel left behind, when it comes to private plans of travelling or experiencing trillion xyz adventures. I sometimes also felt and feel odd, since my past as well as having an illness brought me a specific perspective on life and perspective on valuable things early on. Many young people take more time to maybe gain a similar perspective on life. On some days it really helps me that I live more intentional and minimalistic, which creates less work, less bills and more value. But that only came with time and is still an ongoing process. What helped and helps me by far the most, is to continuely educate myself about my disease and possible upcoming types of treatment. If I would solely rely on knowledge and action of the medical system, I would definitely not be, where I am.
OMG! You said it exactly! I have Fibromyalgia and I’m Type 1 diabetic. People give so much unsolicited advice. I’ve had this for 26 years and I am so tired of hearing people that I have went into myself and I am not the person that I used to be. I wish people would understand that we have tried everything. I’m also happy that you know a friend that works every day, blah,blah,blah… I worked for about 12 years until I just couldn’t anymore. I’m just tired of hearing the crap from everyone about me, so I say nothing. I’m fine…and just leave it there. Bless You!
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing. Especially what you said about unsolicited advice. It is something I will always keep in mind going forward. I think people do want to help but it can be tiring. Especially when the advice is something you have heard a million times. Take care!
Thank you For this video. I feel it's Good that you Share. I send you light and love.
😻
I have fibromyalgia and try to keep it real sharing the ups and down on my youtube channel. I definitely think it's good to share all you are dealing with. I've had my diagnosis for 9 years now so for the most part I know what I'm in for. No one really gets it unless they are also dealing with a chronic illness.
Thank you for sharing what you are going through. I enjoy listening to you and your voice is so soothing. I’m sorry that this is happening to you but your story is helping so many people cope with what they may be going through.
I want to cry. I'm sorry you are going through this. But it's so great to hear I'm not alone in this invisible chronic illness junk. Thank you for posting this. It couldn't have been easy.
I am so glad you shared your Illness with us! I too am struggling with a Chronic Illness. I found out 6 years ago I have stage 3 Kidney disease. It is something that hits you so hard when you are told this is happening. Thank you for helping others know they are not alone.......you are not alone!
Elin, thank you sooo very much for being so vulnerable you nailed how I feel. I am ill and I live alone and have no family or friends do to my condition. I just needed this today. I am sorry that you have this awful illness. Sending prayers.
💚 I see you. I too suffer from a chronic illness and have experienced many of the same things. One day at a time. Things wax and wane. There are so many of us that can empathize. 💚
Elin,
Thank you for this video. I have MS for 30 years now. My complaints are few but wanted to share in case anyone has the same situation. I have an adoring and helpful husband, almost too helpful sometimes. He is like a human “spotter’ wanting to do everything to help me. It makes me upset and I fuss at him saying “I can do this now. Maybe someday I won’t be able to but please let me do it while I can”. I am sure that he may be hurt but I have to tell him💗People are curious about how I feel. I shuffle not walk. I would explain that my level of being tired is like a full day at Disney. Up super early, walking or sitting all day until you get on the tram at closing time to get back to your car and your whole body says “I am DONE!!!” Then next morning live, love and REPEAT! Sending love and prayers to all, whatever your journey holds 💗🙏🏻,
Cathy Gunn
I can relate so much even though we have different chronic illnesses. The fatigue is something "healthy" people can't really relate to. I often get, "yeah, I'm tired too." or someone is trying to cheer me up by "sometimes you just have to get up and do it and stop being lazy." I have learnt who understand and who not to even bother explaining to. I often say "I'm as good as I can be right now." Instead of, I'm fine. It doesn't say much of anything really, but I get out of the white lies of, "I'm fine" because I don't want to talk about my illness.
Thank you for sharing your story. ❤
Thank you for this video. You articulated this perfectly. I’m three years into my chronic illness, pain, imbalance, vision losses and fatigue. Really feeling like I lost so much interest and vitality.In my life. Struggling to get back into living but the constant revolving isolation, anger, and pity are hard to get past.
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing, praying for strength over your condition 🙏
Thank you for sharing this. 💗 I’m in the midst of my diagnosis process right now-so far the words fibromyalgia and lupus are being thrown around. Something’s definitely not right and I’ve been healthy all of my life up until now. Videos like this are helpful.
I’m so glad you shared your story with us. I too suffer from multiple chronic illnesses and also walk that fine line between complaining vs creating awareness and validating what we go through. Thank you for sharing n
I have Atypical Trigeminal Neuralgia, going on 5 years. I don't get a day off from the pain. I feel alone all the time. The way you articulated your feelings were very validating. Stay strong 💪
I came across you when looking at de-cluttering videos! Yours was so sensible i decided to see what else you had videoed about and came across this one about your MS. I admit I knew nothing very much about it until I watched this video. I am so very pleased I did because now I am far more aware of what others may be going through, which I cannot see. I'm retired but used to teach primary school children and I often said to them that old folk we may pass in the street may have been extremely brave at some point in their lives, or have done something which would make us feel proud on their behalf - but we just don't know. To us they look like old people who might need help crossing the road or assistance carrying a heavy bag etc. It was good to see the children react and begin to think about something they hadn't really considered before. I felt the same just now watching this video. Your bravery in dealing with this illness you have and the honest way you talk about both it and its effects on you, is remarkable. I wish to congratulate you on both your efforts to deal with the many facets of the illness and the fact that you've put this information 'out there' so that more people can understand what's happening to people with chronic, invisible illness. To put it simply I admire you and your efforts to deal with your new life. I am so very grateful that you have an understanding and loving husband and what sounds like a truly lovely family. Thank you so very much for this video - and all the others which i have yet to see. Sending a big hug! xx
Yes to all this!!!!! You are not alone!!! I have 140 videos on how my illnesses effect my life. I want others to know they are not alone! Just like you❤ it’s very exhausting in so many ways
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…
Yes! Because you look fine people assume you are fine! Or assume you’re exaggerating. I don’t like speaking about it, because it feels like people with think I’m making it up.
Thank you for sharing your story. ♥️ No negative here. I suffer with burning mouth syndrome. I have had lots of tests, changed my diet and trying some supplements. I live with this everyday. I don't know what to eat. I've lost weight. I'm staying away from spices, wheat and the obvious food that causes burning. I have cried alot. I've been dealing with this since July 2022. It's hard but I'm trying to stay positive.
This is such a powerful message and it’s wonderful to see you willing to talk about it…those of us who have invisible illness thank you because being seen is helpful. Those who do not, can learn so much from this. It is hard. It is sad and it is scary. Saying it out loud is validating and builds a bit of strength I think. Thanks for your willingness to share your thoughts and feelings❤
Hi Elin, this is the first comment I’ve ever made on any CZcams channel. I have been watching your videos and enjoying them, and then I came upon this one…..what can I say? Except that you are one of the warmest, most helpful people I’ve come across on this format. I have a number of invisible chronic illnesses and I so identify with everything you’ve said. I was feeling a bit down, but heck! I’ve got to the age of 73 and I feel inspired by you. You are amazing. What can I do but send you gentle hugs and every positive vibe going. Thank you for everything xx
Dear Elin, we have different illnesses, but I can fully relate to what you said. I especially struggle with the not having energy to do and take part in things. That's all I have the strength to write just now 😑.
I can relate to so many of your symptoms. I also have them daily due to having POTS. The dizziness and exhaustion is always there.
You're not putting off negative energy. You're putting forward an authentic life. A life that's real and not forged for a camera. You sharing your poor health situations can help others. Keep sharing whatever you're comfortable with. Whatever you need to talk about.
This video was so great. This is something that needs to be talked about more often. I have a chronic illness, I’m a severe asthmatic. I was born with it. I’ve had so many asthma attacks throughout my life, I’ve lost count.
I’ve had three major attacks this year alone. Currently going through a flare up. My condition is managed with a lot of different medications, but it’s still quite painful and difficult to live with. Every day it’s a battle. Physically and mentally.
I’m my experience I’ve found that the small handful of of people that I come across who I’ve talked about my illness to don’t really understand the seriousness of it and unfortunately either brush it off or don’t take it seriously. (Even some medical professionals.)
It’s so frustrating not having people around me that take their health seriously due to stigma and or lack of awareness/education.
Feeling like a burden is a horrible feeling, and one that I feel often. Dating is something that I’ve basically just avoided, for fear of viewed as only a “sick”person, but more objectively my illness being a major hurdle in the relationship.
Everything from the doctors appointments, hospital stays, the frequent flare ups, daily medication regimen, loss of self esteem, symptoms getting worse, isolation, depression, missing so much school, lack of sleep, etc. are all things comes alongside chronic illness. It takes so much from you. How much of you can you give to your partner?
But I always remind myself that if a girl loves me, she will love me. She will make her love for me known.
The people in my life like my friends and family love me for me, even though I have a chronic disease - but that feeling of feeling like a burden, still sucks.
Again, thank you for this video, it was very thoughtful and therapeutic.
Much love,
Elie
Respectfully! I appreciate your amazing service DR OBALAR on CZcams , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thanks for sharing Elin, more people need to talk about “invisible illnesses” and I’m glad to hear your experiences.
I say this as I’m laying in bed, feeling like rubbish after cleaning and filming. There’s so much there I can relate to. I’ve been unwell for 14 years and for me the biggest hurdle for me to get past (aside from the debilitating nature) is accepting that my life is different. I had to go through a grieving process for my old life but in turn it bought some positive things into my life too.
It used to really annoy me when people say “I’m tired too” in response to my fatigue but in fairness you cannot understand that level of fatigue unless you experience it. I think most people use fatigue to mean extra tired but for us it’s something different completely.
I don’t know about you but for me it feels different to being tired. I try to explain it as being tired is a feeling of being worn out and needing rest, fatigue as I know it is when the cells in my organs can barely function to the point I cannot sit up. It’s horrific and with my condition some medics still tell us we need exercise and therapy!!
Btw it did not come over as negative and sharing the real story behind your condition is really important. You got me with talking about content creators who pretend everything is ok. I’ve strayed away from talking indepth about it for the same reason as you, it can come across to some as negative- although it’s also about not wanting to be defined by my illness. ❤❤
Hey sis, take your time love you and nurture you. I can relate to your struggle with invisible illness and chronic illness. I too have an invisible chronic illness. It’s scary in a way that people who aren’t in the struggle can’t relate. The only piece of advice that helped me was to find my tribe. This wasn’t negative at all. This is your channel, your vulnerability and your life. Thanks for sharing your story with us. Sis, You are blessed. Hugs.
What a brave thing to do, Elin. I too, struggle with the invisible symptoms of MS…It’s hard when people say “but you look so good!” Take care of yourself. I’m glad you have Andy and supportive family. ❤️
Wow, that description of feeling you are not genuinely connected cos you don't talk about it..The isolation can be the same for abuse. Since healing and journaling I meditate and have insights about easing any 'unhelpful weight we carry' so the negative self talk that keeps us isolated. So I tell myself that this is not being unauthentic, no one really knows and can judge and therefore not care or worry..that I am doing great in my desire to socialize or have moments of company..Its learning to really support my own self through understanding and compassion. Invisible is extremely difficult as society is very superficial in most places where people are very materialistic..Honestly, You are truly shedding so much light for others who struggle. Having Andy and feeling he gets you and there for you is very besutiful. Do what you can in slots of short times that makes your soul happy, Sending you hope and faith for more and more better ways to feel.❤😊Lia
I’ve had fibromyalgia and psoriatic arthritis for 37 years. I doubt many people have the type of fatigue that feels like your last drop of blood is draining out of you. I don’t feel that this video is at all negative. You are stating reality and I appreciate that. There’s so much toxic positivity from able bodied people who seem to expect people with a chronic illness to function at the levels they do.
I felt your words so much: "like your last drop of blood is draining out of you." I have Hashimoto's Thyroiditis and Non-radiographic Spondyloarthritis (positive HLA B27), and my chest has been hurting the past few weeks from constantly pushing through all the stress and pain in my body.
I’m so sorry. People don’t get how life altering any chronic condition is. I wish you all the best.
Thank you Elin for sharing your journey of having a chronic disease. Like many other viewers, I have a chronic disease too with chronic pain - which I’ve had most of my life. You were explaining not complaining, and I found it so helpful to hear how others manage their symptoms and changes/adjustments in their life. Like you, I have to manage my energy and also pain and I write a list at the beginning of each week with what I would like to achieve and reassess that at the beginning of every day depending on how I feel. It is also important to “schedule” in some fun things with friends, family, your pet or alone, to recharge the batteries and have joy in each and every day - even when you are having a bad day. The brain chemicals released help with pain, mood and well-being, and are released when you experience something positive, laugh, relax, cuddle your pet, enjoy a bubble bath, a great movie, breathe in the smell of the ocean, freshly cut grass, a good cup of coffee or a home cooked meal, or watch a child discover something. No one will ever truly understand what your symptoms are like, the same as you don’t truly know what it is like to lose a child, a partner, go through breast cancer etc, and everyone’s experience and support network is different, so I no longer have expectations that people understand. The biggest thing for me was to learn to accept help - with grace - and be grateful, rather than say “No I’m fine thank you” and then sit in the car crying in pain.
There is also the financial cost of a chronic disease from the reduction in your ability to work and earn an income, and the cost of specialists, medication and treatment. You are doing an amazing job dealing with it Elin, and I wish you and your wonderful husband all the very best. Debra x