Funniest thing is that I kept being told, "Be honest with us.", "That's what friends are for. " Then, when you finally explain, they are dumbfounded and don't have any idea what to say. My experience of being honest has caused loss of friendships. Even more than if I just stay home and don't do anything. Hugs to everyone experiencing a chronic illness. Remember, you're not alone.
I don't wear any sort of device or chronic illness and we suffering from this with my bf he lost it when he left his last gf we are planning what we call our time (bedroom time) all the time and we don't have anything stopping us he's just like that I don't get it. And I don't like it it's more him then me it's sad and really tuff.
I've had fibromyalgia and ulcerative colitis for around 5 years at this point. I've learned that if there is an event I want to go to I have to make 3 tiers of being able to go: 1. Basic, just turn up even if not feeling the best 2. Feeling okay, maybe bring a pre-made dish or a soft drink or 3. Feeling great, made a dish day of and able to mingle wholeheartedly. Your friends want you there because they love you. Don't over pressure yourself with expectations of "I should make this or bring this or do that." If your friends are good people, they are going to be happy you showed up because it shows that you value them in your limited energy allotment. And don't be afraid to be honest. Carry around an info card if you're really tired that says all the reasons you might be low energy but still there. Life is messy. Chronic illnesses suck. But at the end of the day we are still people who want to have friends and do things, same as anyone else.
yes!! my friends and i dont even have to invent excuses if one of us doesnt feel good even mentally they will say "you know lets rearrange i do not feel up to it" and either we do or we talk about whats going on. And we dont have to perform anything ...we are FRIENDS. Love your post!
I have had UC since I was 11 years old. I got used to the symptoms, no one felt sorry for me ever so why feel sorry for myself? I am one tough cookie now on remission fir 20 years. Now and then I have a flare, once was hospitalized after a week long bout if Diarra about 15 years ago, dehydrated and the small and large intestine telescopes and blocked my intestines. Thought I was destined for surgery
I can definitely relate! Your explanation of "I'm tired" had me cracking up though. I thought of the saying, "Those who mind don't matter and those who matter don't mind." I want friends that I can be myself around; faking it takes too much of my precious energy. That doesn't mean people always need to know every detail of my health, but if I'm really struggling I want to feel comfortable expressing that, spending more time with people I feel safe expressing that with. Loss of spontaneity is something I grieve at times, but chronic illness has taught me a lot of compassion, to be grateful for the little things and what I CAN do. For example, I can't always spend an entire day out or be super active, but you can bet I'll be texting you to check in or encourage you and crocheting you a blanket! lol It's been a good tool to weed out fake friends too
Honestly Maggie if I had the answer I would love to let everyone like this know😞 I’m the worst person to depend on, to show up for anything and if I actually do show up the fear of being sick is just as bad as being sick. I never eat when I’m out and I feel like all I do is disappoint people. Forget about sex😳 however I’m 55 and things with me didn’t get bad until I was in my forties so I was able to be a functioning mom for the majority of my kids growing up❤️ and I’m very thankful for that. I want to get better so I can have a bit of a life before it’s gone but I have to come to terms with the possibility that this is just the way it’s going to be and I pray it doesn’t get any worse 🤞🤞I have recently started to paint and that helps a lot with what’s going on mentally ❤️🌹 I hope you had a nice Valentine’s Day 🤞✌️
This is tough for me to answer as someone with a physical disability that does impact my going to the rest room. It's always bothered me more how people respond rather than any thought on my part. All that said being incontinent allows there to be set times when I go to the restroom. As far as a partner relationship I am not in one and would never consider being in one with anyone who couldn't handle my reality or expected payment for handling it. When out and about what's most difficult is a standard restroom with one potty one sink and people waiting if I'm the one in there. I've gotten questions like what took you so long or you should be like or do such and such. I think the hardest part is when choosing to attend something that ends up being several hours, but falls between my potty schedule, is when people notice I haven't gone and offer to take me, even barely knowing me, unaware of what's really involved. Those things make it harder so id just rather people not ask questions or offer help. I thrive on consistency and regularity being spontaneous generally gives me anxiety. But if people genuinely want me around they better take into consideration all that entails or I really want no part of it.
I have felt this way my entire life.. I have IBS and always tummy issues… and migraines …. The migraines and tummy issues are related . So we married at 19 we are 71.. and the truth is that sometimes doing the get together are exhausting! Say no…. It is ok to say no…I didn’t get to this point easily we have had and still have a lot of things that happen. We have two dogs one is over 14 the other is over 10. We cannot leave for long periods of time or the 14 will have an accident… Life keeps presenting situations that challenge..know what is truly good for you.. and do that and thrive♥️♥️
IBS here too. It took years for certain kin to really understood when it came to eating certain things,no means no. I do not care what others think and just do what is best for me.
This is long.. so sorry! It was a radical difference! I could eat, move, everything was so much better..but now the hernia is tearing, it will always be something. VEDS is a rare horrific disease. The things that helped me in social settings was my sense of humour. People are weird about chronic health issues. I have had more bad uninformed stuff thrown at me. I simply say, hmm I will have to look into that.. can you write that doctor's name down? Reiki is good for irritable bowel? I tried it all! I had an epiphany one day that I literally was lying through my teeth just to placate everyone else! Now I say as little as possible, if people ask me if I have eaten I say no, I was having a great chat..maybe in a bit. My husband is just like Zak... calm cool collective, but he is on it if I get sick! As you grow old together this thing happens where you learn to say no.. to others so you can be together more...intimacy can be so much more than you think as long as you talk, be honest, and our premarital counsellor said 15 minutes of holding each other at night keeps a relationship steady.. I did it, but not til lately did I fully understand.. to be intimate when you are chronic requires a LOT of trust! It begins with 15 minutes of holding. If you keep at it, it's easier to share what's holding you back, and the conversation starts.. this hurts, I'm tired, frustrated, sad.. and you. begin to reroute those things that hold you back. There then starts new ways to be intimate, to close the door to the world and just BE! You do so many selfless things you are hard on yourself like I am! Zak is your true north.. trust him. My husband still makes my knees weak after 38 years..if you just work at staying close it will come back... maybe not the same as before, but it's better because the truth is there and it's not an obstacle, but the vehicle to make a new love language, just as fulfilling and maybe more special than the normal people have! I would never say so much, but I see your struggles and your strength is such a miracle! Be encouraged, because you have each other forever and love stories have no end! I hope this didn't come off weird, but sickness causes a lot of relationship problems and I love the way you two are together! 😊❤
This was such a touching and helpful response! My daughter suffers from EDS (but not VEDS), and all the comorbidities that go along with it can really drag one down-the migraines, subluxing joints, gastro issues, chronic pain everywhere...it's a horrible disease. The issue of trying to be social when you just don't feel well, is a real obstacle. Thank you for your honesty.
It is incredibly validating to hear you discuss these very relatable issues!! Losing spontaneity, fear of missing out, etc... I hope it is ok that I vent a bit here.The part where you shared things "you would have said" instead of saying you are tired had me in tears. That is EXACTLY what I have go through my mind when anyone asks how I am, why I am not eating, why I am quiet, why I didn't attend whatever, etc... I hate the small talk "how are you?" I am an honest person who now feels forced to lie. A healthy person can't truly understand how much thought and energy goes into basic daily life with a debilitating chronic condition. I was lucky I went through a few years of feeling ok, of being able to manage my digestive health issues well enough to build a career, enter a great committed relationship, develop friendships, etc...When my health started to decline again though 9 years ago everything I had built up started to fall apart. First I had to leave my career, then social commitments/volunteer work, then friends disappeared... When after another 2.5 years my health continued to decline my 4 year long committed relationship collapsed. He went from compassionate and supportive to resentful, from open to shut down, from loving to demeaning. I could not tolerate the hatefulness, so I was the one to leave. I am happier sick & alone than I was sick & with someone who blamed their unhappiness on my illness. It is exhausting though.
I started watching your channel as a way to learn more about IBD and the challenges it causes because my daughter suffers from it. Surprisingly though, I find I can relate with so many of the things you brought up in this video. I had a different chronic problem (35 years of debilitating migraines) and went through the same kind of social problems. There is always that one person that has to keep poking at you, has to ask 50 questions, never discretely, and makes you feel like you have to do all this explaining. I wish I could tell you that my relationships were maintained. They were not. People stop inviting you to things when you've said no too many times. They lack empathy and tact. The way I look at it, if someone truly cares, they will ask in advance what accommodations you may need, whatever the health issue, to be sure you can be comfortable to attend.
I got my ileostomy ten years ago. I’ve not had intercourse with my husband since then. He is such a loving, caring and supportive person and I can count myself lucky. Seriously. Although I can talk to him about every problem or detail regarding my stoma, he’s obviously not physically attracted to me anymore. I’m sure that the fact that I myself am so unhappy with the situation does also influence him. Bottom line is, we used to have an incredible sex life. No other partner before him actually made me want to be intimate every day. It’s therefore even more painful to have lost that intimacy. We are both in our early 50s and I think it’s just too early to give up on all the fun. It makes me really sad. The other aspect of having lost general spontaneity is also something I completely understand. You don’t want to be the “party pooper”, but sometimes it feels like all the life has been sucked out of you and all you can do is be present but not active. Basically surviving. And it’s completely impossible to make others understand how much things add up and culminate into a “tired” person. It makes me feel lonely. I want to be there but I don’t want to bring down the atmosphere with my tiredness or even worse, my horrendous explanations.
I too have issues. UC since 2015 went from a mild case to the worst case in a space of 4 years. 2019 got a Ileostomy with a permanent stoma. I have a high output ostomy so empty about 7-10 times a day and that is with medication. Then in 2021 I get blood cancer. So since 2015 my life has been just revolving around doctors appointments, tests and being consistently tired. I can't plan anything because you don't know how you are going to feel that day, I totally get it. As how to fix it, I have not a clue.
I had rectal cancer in 2015 and a permanent colostomy. I also have been diagnosed with a rare blood cancer, Myelodysplastic Syndrome, MDS. The irony is that I’m in remission from the rectal cancer, but now have another one from the treatment I had. My life is never boring. I want to be stress deprived! I know I can’t fix it either. Not having any control over the MDS is very difficult to deal with each day.
Happy Valentine's Day. I've experienced the same feelings and emotions. I was diagnosed with ulcerative Colitis in 2019 and I also had several strokes which put me in a wheelchair. Definitely a game changer. I've had to adapt and adjust.
Maggie, your honesty and openness talking about your condition and sharing it with so many people is just amazing. I have a deteriorating spine and although I sill have mobility, it is limited and affects my whole life. I had to change my whole lifestyle and it is exhausting to do the most simple things. I have to plan everything. I find that strangers are often more caring and concerned about my well-being than my family. We need people like you and keep doing what you are doing!! Your husband is an amazing support.
I have fibromyalgia I’m lucky I’ve a great husband married 44 years he’s a Zak just goes with my flow realises when the tiredness is overwhelming the pain too much and takes over the lead hard for him initially as I’m the talker ! You’re right having support from your partner does help from feelings of disappointment for not managing to do things we want never am I ever made feel bad about me
You have made me aware to not just ask vague "How are you doing?" If I ask I should want to hear the whole ugly truth. Knowing this I would hope I would give you a hug and ask you want I can do to help. And mean it!!
Since I was diagnosed with Crohn's about 5 years ago a lot of things had to change. What I did to relieve my frustration with losing spontaneity was a bit of compromise. First, I prioritized the people in my life, for example, my husband gets first dibs on my energy. When I'm having a good day I do something just for him, make him a special meal or dessert, I offer to scratch his back to make him feel special. My Mom trumps my husband if she needs me, she is 85 and I am the one she calls for everything, fortunately she is still independent, lives alone, drives ect. We have 3 daughters and 10 grandchildren and another on the way. Pregnant daughter trumps everyone for now because she is high risk and needs me. Everyone else comes after my family, of course. When we are invited to an event I prep and plan to be at my best for the event. I make my dish a day or two in advance or I buy a ready made dish to take. I will only plan 1 or 2 events per week. I have also had to communicate to friends and let them know that my attendance is tentative based on how I feel when the time comes. It's not spontaneous exactly but I enjoy more of my life. As for intimacy, I take care of my husbands needs one way or another, if you get my drift. When I offer to meet his needs we have a great time together. Sending love from Atlanta GA
You are such a sweetheart. You have been through so much so just give yourself a break. Spontaneity is not easy for all of us at times. Don't worry or be so hard on yourself, you have a wonderful husband who supports you. It will come back. I also live in PA, near Pittsburgh.
Literally going through the same thing. This is life and I'm so sick of people saying I hope you feel better, you don't look sick, does your stomach hurt. I'm still trying to accept it. My hubby is the same. He's seen the rock bottom. No pun intended. I don't go out anymore, I'm just too tired. I'll never be the same as I was 5 or 6 yrs ago. Love to you
Hi Maggie, it is like you are completely mirroring what I feel. On top of the UC, AS now I have been diagnosed with Lupus as well. I used to be the bubbly doll of the party and now I am just so tired all the time. Talking about bedroom issues, because of meds etc I have chronic vanginal infection, which is so painful, but also very frustrating. Thank you so much for making this video, thank you so much for being honest, I really thought I was being stupid for feeling the way I do, seeing that others have the same feeling, make me feel less lonely in this. I have the most awesome, amazing husband, I thank God for him every day. If you have any tips please do make a follow up video, I would love to feel better, for him, he so deserve it Lots of hugs to you and Zak. Happy Valentines day
I really needed to hear this. I feel totally the same way, so thank you for sharing because it's hard to admit it to yourself. I'm in the process of having therapy to help overcome this (including physical therapy), and it's scary. It's so reassuring to watch your video and read the comments of others, to know I'm not the only one. We have a great community, and you help bring that together.
Oh Maggie, I watched your video a couple of days ago and have been pondering on how I would comment. First let me say, I started watching your Vlogs because I have a friend who had colorectal cancer and while she was dealing with chemo and radiation, colon removal and all that encompasses, she found out she also has breast cancer. Her journey has been long and complicated. I often wonder how she stays so positive and deals with every challenge that is presented to her. I think she is a Hero. I would say the same of you. You share your life and experiences in a way that makes others feel more comfortable about learning how Crohn’s disease has affected every part of your life. And that helps others understand. As far as the FOMO or lack being spontaneous, if these are people you care about and who care about you, you might just look them straight in the eye and say something like…… You know, I am so happy to be included and have looked forward to seeing everyone. However, my mind and my body are at odds today. I want to enjoy myself. However, my body is wanting to be a “Party-Pooper” in every sense of the word. So, if I am being quiet or not my normally enjoyable self, I hope you will understand and realize it has absolutely nothing to do with you or this awesome get together. Good luck Maggie.
I've lost friends family and a husband of 14 yrs, couldn't handle it, I've been told I'm boring now or you always cancel. BE HONEST. When people ask I tell them flat out but don't want a pity party, I keep it light and try n keep a sense of humor
I have been dealing with several chronic health issues for many years and whenever someone asks me how am I doing when I am not having a great day I just say that I am good. There is really no reason to go into full detail because usually the person asking does not want to know the full details anyway.
Hey there, New subscriber.... Your topics a you cover are RIGHT on point with concerns,challenges to chronic illness. I had a question if you do not mind... how do you maintain a good weight with chronic illness. I have Intractable pain with my illness, unfortunately, and my appetite really suffers. Do you have ANy food recommendation or different methods or ways to help this♡ You are so inspiring, have a wonderful way of dealing with everything! I see so much strength in you! Thank you for sharing with us! Love and light
It is your own anxiety about being with your friends, not your autoimmune disorder itself that makes being around you uncomfortable/painful. Over time it becomes a self-fulfilling worry. It has turned into that. And one more thing, as an empath, I pickup on depression and self isolation. Get treatment: I recommend DBT talk therapy as well as the psych meds.
@@UsernamesForDummies It would be if you were autistic like me. That doesn’t mean I am not, rather I am not normal/neurotypical. If that make me a reject to you, now that would be my *normal*. I find it telling if you can’t discount the logic, then you resort to personal discount. To be followed (wait for it) by dismissal/discard. What I don’t sense from you is any empathy. Remember this isn’t about you. It is my best and deepest insight for Maggie. This is in the category of needs, not wants. I wrote what I did because I hold her in my cares & prayers. And this is flash of inspiration I got, such as it is. And Maggie, my cares & prayers go with you, always.
Yes I understand this all too well. I have mixed autoimmune issues and you never know how you will feel from day to day. It never fails too when I have something planned is when I feel extremely bad. It makes making plans anymore very difficult
You are so lucky to have Zak. He's so kind. I love watching you two together. I've never had a kind and gentle spouse. I tried 2 times and divorced 2 times. I envy you.
I can relate! I'm an incomplete paraplegic. I also have bowel issues. I'm in my chair most often. I can walk a very short distance. Anyway, I so often experience the same feelings. I'm 67 yrs old and was 46 at the time of my accident. And also I have severe hearing loss. I try to have fun and enjoy things with my husband also. But really those times are becoming fewer as time goes on. I have finally decided that if I'm not comfortable being around other people, then I just need to say NO I don't think I'd like to go. While being around other people doesn't really bring me a lot of joy, I've had to learn to do the things that do bring me joy. At my age, staying home, reading books, doing crafts, and sewing. And spending time with family is my idea of a great time. Intimacy is pretty much an old stranger to us. But we survive. You have your videos, which by the way have been very therapeutic to me. I've also come to realize we are not alone. Every person we meet probably has something they too are struggling with. Our normal may be different than the next person's. But hey, their normal is in some way very odd as well. Therapy has helped me, but I have a long way to go.
I am single with an ileostomy so I do not feel the same pressure to attend certain events. But, when I was healthy and married, my husband very much enjoyed going to auto racing events. I was not very interested and had a small child. So, I encouraged him to go alone or with a friend. I didn't have to feel guilty that he was missing out and I was happily at home with my small child. All that to say maybe suggest Zac attend some of these events alone or with a friend. That way you can be comfortable at home and not feel guilty that you are causing him to miss out.
Acceptance! Accept and don't fight " what is" anymore, just work with it and make sure you have fun adapting to a "new" reality! I hope it helped, I wish you all the best!
I have severe bipolar and I feel the same way you do even though I have a psychiatric disability, not a physical one. Sometimes I have crying spells where I can’t get out of an emotional funk. I stopped making plans bc I never know what mood I’ll be in when I wake up and my moods are INTENSE. Sometimes my wife wants to get intimate with me and I immediately turn her down bc I am in such a depressed mood. She sometimes takes offense bc it seems like I am rejecting her, but it’s really due to my mental illness.
Maggie and Zak Happy Valentines day!!! I am in your shoes very tired and leave the house for doctors appointment only...I don't what to say...but you have Zak to take care of you!!! Life changes are hard say no when your not feeling well...its ok to say NO!!! Plus you have a green thumb and you're using it wow !!! Be happy with little things!!! 😊 mags you're the best remember that!!!
First off, thank you for these latest vlogs. I have had crohns for 33 years. So far your talks have made me feel not so alone. The disease is horrid, not necessarily because of the physical symptoms, but the emotional aspects. I went to a therapist just before my first ostomy surgery. One day I said I was so tired of the “How are u feeling question. This is what she said…. Think of the outside world as guests to your planet. Kind of like visiting Disney world. Let them ride a few rides, buy some souvenirs and at the end of the day pat them on their heads and send them home. They will never truly understand but at least they go home having had a good time. I thought she was nuts until I got that miserable question again. How do I feel? I am tired and sick and am never without pain. But, if I am here to answer your question, that means I am still alive and not hanging out at a hospital with tubes everywhere. Now, go and enjoy the day, I am just going to rest . Because, I am a bit like Disney world. The ups and downs, the strange foods, and somewhere in my intestine I swear there is a mouse wreaking havoc.
So we'll said! I am copying this and saving to my journal to remind myself when I need. My surgeon who performed my life-saving surgery leaving me with ileostomy has reminded me on numerous occasions, when terribly depressed, to myself, raise both thumbs up and repeat, "I am alive".
This is when I am thankful I did smoke for so many years! I can't imagine at your age going through this for a lifetime. Zak loves you and understands just tell him, come up with a "code word" and use it!! My husband and I have one for when I am ready to leave somewhere. I just nod and he knows anymore.
I know that feeling you get forgotten I have crohns and a stoma but iv always made sure every one knows I have a stoma I refuse to hide it away it's a case of you take me as I am if not then you're lose
I want to cry listening to what you have said in this video. On the other hand, so happy you have Zach in your life. Lastly, I am proud of you bc you are a thinking person who wants to work through and deal with these issues.
Suggested responses to, "How are you?": Well enough, thanks (with a smile if you can manage it); Looking forward to a better tomorrow, thanks (then they can ask for details, or not) I'm happy to be here, thanks - how are you? Honestly, it's been a rough day, but I am so glad to see you! I also suggest you give yourself a break. Take something from the deli to parties, that perhaps Zak can pick up. You can transfer whatever into your own dishes. Call the deli ahead and ask what's available. Secondly, arrange a signal with Zak ahead of time, and then leave early. The most important things are that you showed up, with a contribution to the table. If pressed to say why, that is the time for honesty: Sorry, my colostomy's calling!
On the rare occasions I do go to group events where I don't want to be a downer, and they ask how I am, I usually say, "not great, but it's okay." That tells the truth, but also gives them an out to not need to "fix" me. It also gives me an out not to need to detail things I don't want to share. I usually quickly follow up by asking them something about themselves to direct the conversation away from me.
My dear girl, I have wrestled forever with this situation. I wish I could adopt you, because you are so honest, real and you have a beautiful soul. I am 56, I have been sick my entire life..if anyone was not cut out to be sick it's me! I see myself in you. I am a Celiac, severe. I am Diabetic, and have horror stories about surgeries. I came to the decision at 6 yrs that throwing up in the bushes at school as soon as I got off the bus because of the oatmeal breakfast that 16:43 16:43 somehow food was not my friend. I had terrible asthma that held me back from my first love.. singing and theatre. I just dumped the oatmeal when my Mom couldn't see, and gave my lunch to other kids who were not as fortunate as me. I had a ton of creative talent and it was my fuel until the teen years and I became obsessed with my schoolwork. I took 4 languages, history, English, Theatre class, plus all the others and to survive the days I rarely ate. Once when I was about 8 I was unusually quiet and the teacher asked me if I was ok. I said my tummy hurt.. it did. That resulted in a meeting with my Mom and I with this teacher. She basically asked if there was trouble at home. I looked at my beautiful smart loving dedicated Mom reel from the confrontation! I really learned to be all things to all people..but it was to my detriment. I got good grades, honours, citizen awards, I was in Girl Guides and sang in choir, did theatre and made fun of my other odd things like clumsiness. Always the life of the party. At home I was depleted. I slept a lot, read a lot, and had pneumonia every year and anything the rest of the world had. It was like I had no immune system. I was tested for MS or vestibular problems at 14 because I fell up and down stairs for a year! I went to many specialists..they found nothing remarkable. I went into aerobics, water areobics and weight training and went for my life guard certificate. I thought I was just weak. Fast forward to adulthood.. three kids in three years. The pill did not work. I had sections with each. Lots of body parts removed. I had ovarian cysts kidney infections and stones and they were radio opaque so they never showed on anything, I had adenomyosis and at 30 got that thing out! I always knew it was all part of something bigger. My kids had serious health problems. My one daughter became epileptic after meningitis. She had kidney stones at twelve! So, I lead worship in church, had an active life.. despite it all I was a busy Mom. I also sang in a band. But before I ate I did my day. I was SO hard on myself. Forcing myself to be " normal" whatever that is. Then my epileptic daughter came home because of her health. I was raising a second family she had two young children and just was unable. So it just went like that until 50 and the only way I can describe it is it was like God pulled my legs out from underneath me. I was intolerant to heat, cold, food, life in general. Pain took over. I finally got a diagnosis, Vascular Ehlers Danlos Syndrome, a connective tissue disease. I found you because I had megacolon and it was clear something had to be done or I would rupture. So your wisdoms in hand I had an ileostomy. I wish I had one always the change was
So far for me (colorectal cancer/colostomy), the only thing that's important are the relationships with your significant other and family. The more they are with you, or you are with people close to you, your anxiety will melt. You're young. As time goes, things like "spontaneity" will manifest in other ways. You've got a good heart. It's all you need.
Whilst there might be no immediate answers, I think talking about it openly rather than remaining silent, is very good. By doing this, you are creating education and understanding. There will of course always be some people who may be too wrapped up in their own lives to take in what you say, but others can listen and perhaps learn to be more understanding next time they meet you at a social situation. Your channel is creating education and understanding.
Thanks Maggie for always bringing topics to the forefront no matter how difficult it might be. My issues are mentally and less physical but because I had to deal with it my hole life (nearly 35 years) I think I still have a good understanding of what it means to be in constante struggle with a part of yourself that just seems to not want to cooporate. There are different ways I tried but I feel the most helpful for me in social situation was to take the time and really educate people not only about my condition but also how the can help me. Example: Instead of aking me: Are you okay? I told them it helps more to ask: How can I help? Or I see you don't feel well is there anything I can do to make it easier for you? They also know that I don't always want help and when I answer NO they accept it and move on. This works most times now because I have reached a good level of understanding with them. They will always be more accepting and understanding than I am with myself. I still have to work on not beating myself up over everytime I cancel something or missout on a celebration. One way of dealing with it was to have meaningful time with them every chance I get. Calling them when I had a good afternoon to check in on thier lifes or to tell them hey today is a good time to visit me. I know the more I am angry with myself the more I will not be able to be there and do things I want so thats my motivation to give the part that doesn't cooporate real down time and make the most of the time I have energy to live my life.
As someone with a social disability, who is paranoid about people reacting weird: It depends on the person, but I'll usually start with the basic/socially acceptable answer and see how they do. The closer I get to someone, the more honest I am, and I might even tell them, "The more comfortable I become with you, the more you'll see it come out." I can usually tell the difference between when and who wants the basic answer, and when they can handle the real one. And from the other side, I would feel bad if I knew someone was pushing through being miserable because they didn't want to disappoint me! It'll be fine with the right people.
Happy Valentine's Day! You are so fortunate to have a supporting partner. If life turns on its head and I'm expected to go participate, I fast with liquids. Tell them that looks so good when they point at food. If asked how I'm doing, my response is often I've been so busy lately, not elaborating at what, then I switch and ask about them. I'm positive people start feeling bad when you back out. I don't want empathy, I just want to participate. Hope you spoiled each other today.
It really bothers me when I'm with several friends or family members and even though they all know I have a GI disorder somebody asks: "Why don't you eat? don't you like the food? why don't you drink anything? don't you feel well? why are you so quiet?". In the past I felt ashamed and didn't know how to hide the fact that I don't feel well, I made up various reasons, but now it gets on my nerves when I hear this questions. So if I know I won't feel physically well to meet and have fun with people , I don't go anymore! Yeah, not a great way to deal with that, maybe I become too sensitive over time..
I’m glad you told us the real answer. It’s a lot. I have a few minor health issues but they do take a lot of explaining. When I get up from a chair like in a restaurant, I need to stand for awhile before I can walk. I’m so tired of telling everyone to go ahead. They don’t, they wait and then I feel stupid. Ugh. These people all know I have arthritis but they never seem to remember that I can’t do certain things. Kind of frustrating.
I have Ulcerative Colitis/Ostomy and I am brutal honest with people about where I'm at with my illness. Maybe it isn't always easy and maybe it isn't always "polite" but I decided from day one this is me and this is how I come, with issues. No I'm not okay but I'm here and I'm trying to be apart of it all and that's okay so let's move on from me x
When I had my ostomy my intimacy went downhill and so did my husband’s for fear of “hurting” me. That was back in 2007 and here we are in 2023. I am covered with scars and still feel embarrassed by my body. I apologize for digressing. You are a beautiful young woman and Zack is your lifelong perfect partner. It will be ❤❤❤ always comes first! Love and prayers coming your way!
Maggie you have to put yourself first. I’m guessing most of your friends know your situation. I was diagnosed 4 yrs ago with Sjogrens, fibromyalgia, and OA. There hasn’t been a day that I don’t feel like staying in bed for the rest of my life. I’ve also had spine surgery which didn’t work, I have 10 screws, 2 rods and a plate in my back. I am now going for RFA. My hubby like yours, fights for me, he never forces me to have relations, go to parties, etc. I can’t feel bad missing out, I have to take care of me with any time I have left. Meds help but most cause other problems, most people just say, well you have to get out, go for walks, just do it. If I could just do it, I would! I also had my rat knee replaced last year. I’m going to be 72 in July and married for 50 yrs in May. I have 2 sons, one currently not speaking to us, neither is his wife. The younger one has the most adorable 4 1/2 son and we get to see, re: FT. We just adopted a cat and she is the love of my life, she is now my therapy cat, she just doesn’t know it yet! I often wonder what people really think but I beginning not to care. I also can’t cry anymore, thanks to sjogrens. Please take care of you first, if they are your friends they will understand your feelings and call to see how you are doing and if they can help. No college here, hopefully just a big heart, which you have. Talk to Zak a lot and let him know how you are really feeling. Please take care
I used to care what EVERYONE thought about my body and why I have a bag. The question that does bother me is "So why did you get that bag and go through all of your surgeries if you are still so sick?" It truly is a struggle to determine whether they want the truth or something downplayed. As far as "intimacy" goes, I won't go any further until they know that "if you sleep with me, you sleep with my bag". I've decided someone's age doesn't matter as much as their maturity does. This generation has access to so much information, especially medical. I don't really run into people who don't know anything about diseases like Crohn's. Actually most people are interested in my conditions vs. grossed out. Thank you for having this channel and for sharing your private life with us. For those who read this, take care, stay strong and be easy on yourself.
I have stage 4 cancer with a very poor prognosis. Each day is different with severe pain, exhaustion, stomach issues and bowel issues. My social time with people other than my family is also unpredictable. If I do go to a social engagement, sometimes I have to leave after an hour. Sometimes I just sit quietly and have very good conversations one on one. Sometimes I have to cancel at last minute. I used to be very bubbly and outgoing, but not anymore and I’m actually very OK with that. I’ve learned to go with the flow and go easy on myself. I am older, 67, and don’t have a partner, so I can feel your frustration with you being young and in love, but I have no answers for that, but your are blessed to have a husband like Zak and just try to go easy on yourself. So many things in life are out of our control, but our response to these situations is always under our control. You are such an inspiration to many, many of us. 💕🌸
Hi Maggie, I love listening to you, are such an inspiration to me, I have several illnesses and have just been diagnosed with rhumatoid arthritis, which means constant pain and trying to work out the best way forward. I have a very understanding husband who I have been married to for 33 years and totally understands why we can't get intimate and he is fine with that, we still have a whole lot of fun and I try and push forward when I meet up with friends and I speak the truth and they also understand and check in on me from time to time, apologies for the ramble. Anne from Australia
For the last 4 years this time around it has gone back and forth approximately 2-3 DOZEN times that I have Crohns, not Crohns, Crohns, not Crohns- but on several steroids, Crohns medications, had colon removed 2012, removed a lot of small intestine March 2021, severe pain literally ALL the time, exhausted 24/7… finally got the ball rolling to get the ileostomy in a couple weeks while dealing with non-epileptic seizure disorder, headaches/migraine disorder AND trying to escape from a narcissistic relationship of 6 1/2 years. It’s wonderful that you have such a wonderful person in your life!! I’m sure that is a huge part of everything!! I definitely have lost spontaneity or even enjoy ANYTHING anymore. I hope to learn from all your wonderful videos- THANK YOU!!!
I can so relate to you on this! I was born with Spina Bifida (in 1966) and was diagnosed with Eosiniphilic Esophagitis about 10 years ago. I have to be careful what I eat when I'm out for fear of "explosions". I end up spending a lot of time in the bathroom when I want to be socializing! I didn't seem to have too many problems in the bedroom when I was married (I have a 16-year-old daughter), or so i thought! My birth defect nor my digestive problems have anything to do with why we are no longer together! That's a whole other can of worms. I have been with someone "new" for 6 years now (come July 20th, his birthday). Like Zak, he just rolls with it. We do have occasional "interruptions", but he just goes with the flow! I love him dearly!
GREt video. At 37 overnight I became chronically sick. Now, at 44, for the last 7 years I have to tell everyone… I may have to cancel that day. I have to take extra insurance any time I travel just in case… but I have no spontaneity left in my life. I have a rare kidney disease. I d been in the hospital over 700 days since 2016. (Mostly 2016-2019). I get chemo even though I don’t have cancer, to Treat. I really felt it deeply when you said I don’t want to go to restaurants. 💯. I have been to maybe 2-3 dinners out since 2016
i am so appreciative of you and your willingness to offer help, ideas and personal experiences so openly. it's so funny how alone all this can be and how it shapes us. i've always felt like i've lived my life on the perimeter. i truly have felt alone in all this, all my life. i started having symptoms at 12, was diagnosed at 16, and have lived with decades of treatments, surgeries and finally got my ileostomy at 60. believe me when i tell you that i was truly ALONE (much being self induced). i had no idea of the community of ibs folks out there. if i had known of all the support it might have made my journey less isolating. i don't think i'd change things as it has shaped my thoughts and life however, my understanding of all this might have been less painful. thank you for all you do, you are truly making a huge difference in the lives of many !
Thank you for bringing up this sensitive topic. It’s so easy to be self conscious with an Ostomy, and spontaneity becomes a challenge. We need to have more conversations like this one.
I wish I knew. I have been plagued by all kinds of GI problems my whole life, and the most recent issues with diarrhea after eating have kept me pretty much at home, since I have such a short time to get to the toilet. I'm now 60 and content with staying home, particularly since I have other medical issues (including episodes of sudden paralysis). I admire you for your tenacity and for your openness about IBD and your stoma and the issues you have. I am sure it helps people, especially young people like you. Not everyone will talk about these issues. I also wanted to tell you that you were the most beautiful bride I've ever seen. I think that every time your wedding video pops up. Hugs.
Maggie, you have a beautiful smile. When my mother had six inches of her bowel removed, I saw, during her recovery she lost 80 % of her energy. So I would suspect you have lost more, and this means you have less energy than most. You will just have to be careful where you expend it.
@5:19 So true. At 55 chronic illness has been an invisible companion for prob half my life. For too many it’s from birth. Normal for those in same boat to hibernate unless very small gatherings. For those who live in a building it’s harder but learn to run to cope. You’ll learn most others have their own issues at any given time and talk at not with you. You don’t owe any an explanation and very OK to deflect with I’m tired or fine etc. BUT pls ask for help if /when needed. Peace and health.
My answer to the loaded question makes me liar liar pants on fire. I've got complex medical issues including upper and lower gi. I always feel that nobody deserves me unloading on them.
I have to load up on pain medication and 🌱 before any kind of intimacy because the pain is severe and I find myself holding my breath and hoping my partner won't notice how much I'm hurting. It sucks. I never leave the house anymore unless it's for doctors.
I’m 53 I haven’t had sex in about 20 years I have scoliosis and multiple spinal issues I also have COPD Except for pain I don’t feel sex and it hurts too much just to lie on my back and I can’t breathe lying on my back flat either
Imo and from what I’ve watched, Zach is amazing, it seems. The love he has for you is evident. He is lucky to have you and the same for the other way around. I wish you two all the best.
I have Cramps since a year now still dont know why. People say to me i have IBS and i did all the tests all Negative. I dont know anymore How To cope with cramps and nobody Knows why
This video really touched me. I've given up on trying to find a boyfriend because there's just too much I have to take care off because of the embarrassing health problems i have. I don't have friends, because I haven't found anyone who understand how hard it is to get through the day. I feel embarrassed about these problems and it's easier to stay at home.
Oh see I made a mistake . Now my world could crash in on me but I meant to say I also have OA not is This is such an embarrassing thing. There probably isn’t an os🙃
I've read many interesting comments here. A lot of people make a good point that intimacy is much more than sexual intimacy with someone you care for. Even without illnesses, we all have bodies that breakdown eventually! Sometimes it is just a simple matter of not being able to do something at the time. I also think in those moments where we feel better, we should embrace that and put on a nice outfit or whatever makes you feel good about yourself and indulge in that moment. Easier said than done but we can only do our best with what we have in terms of the issues in our lives.
Happy Valentine’s Day Maggie! Thanks for sharing this video with us❤️ im sure most of us here can relate 😢 I’ve had UC for about 10 years now.. I met my fiancé when I was recently diagnosed and he’s been there for me since day 1. I had a total colectomy & ileostomy reversal (jpouch now) and I’m feeling great! My fiancé & I are able to do more now that I’m feeling healthy 😇
I have ibs and my hubby has cleaned up after me soo much....from trying to get the front door opened and it running down my legs on the floor all the way to the bathroom to changing sheets..yes while making love....getting mr clothes you name it hes done it.
After 10 yrs with a stoma I do fine it's easier to read what's going on with the short bowel and movements into the bag but it still surprises me but it's now part of me
Hi im glad you aretallking on this subject because i have trouble to i am an illiostamit i havent been out much last time i went to a party was christmas i tryed to be bright and cherry then i had coments like yoy havent eatern much to keep this lady from questioning me i moved my seat when she went away then blow me down she found me agein she said you must have some cake i insist i did and my bag split then so did i i ran outans staight homenow i think i will just cut my time shorter and if i am qustioned i am going to reply i have a medical condition which i have maggie i have crions diseasd to and hope not to be saked any more questions like you maggie i have a great understanding husbond from lynda i live in newzealand
