Naomi Care

@naomi-care | contributor
I was diagnosed with Crohn’s Disease when I was 15 years old. Now, more than a decade later, I’ve worked my way through all the conventional therapies. I’m here to share my story…
Naomi Care

12 Ways You Can Support Your Friend With Crohn’s Disease

You have a friend and one day they tell you they have Crohn’s disease. Or maybe you’ve known for ages, but it’s only been recently that they’ve started to struggle more. Either way, because you’re a kind and decent human your main question is, “How can I support my friend? What do I do?” First of all, Crohn’s disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. Symptoms often include abdominal pain, diarrhea, fatigue and weight loss. Think of it as having about of food poisoning that stays with you for the rest of your life. Some people have next to no symptoms for years, while others have severe symptoms that can greatly impact their lives. It’s unpredictable, chronic, and can be difficult to talk to people about. Once you’ve worked out what Crohn’s is, that it’s not contagious, and that you can’t cure it through (insert spurious cure here), you’re ready to step up into finding genuine ways to help your friend. From over a decade of experience, here’s what has helped me: 1. Be there. The most important thing is to be there for them, be their friend. You’ll make mistakes, but they will too. One night you might share your popcorn with them and send them to the emergency room – oops. But hey, they missed your birthday party, again. It’s ok to say the wrong thing, do the wrong thing or feel a little unsure. All friendships can be a bit like that, but I promise it is better to hang in there and make a few mistakes than it is to disappear. 2. Accept they may miss your important things. Sometimes, when Crohn’s is flaring, or even when it is in remission, it can be very difficult to stick to plans. This can be because of fatigue or because your friend is stuck on the loo, or a myriad of other plan ruining symptoms. It can be incredibly frustrating for both of you. It’s even worse when it happens a lot. The best thing you can do is understand that they are trying, accept that this time they might not be there and will try again a different day. No matter how frustrating it is for you, it’s probably worse for your friend who is feeling unwell, upset they let you down, and angry that their body won’t let them do what’s important to them. Let them know it’s OK. 3. If they say they need the loo, they need it now. Not in 10 minutes, not just after you’ve finished applying your eyeliner – now. If you love your friend, like them, or even have some basic human respect for them, let them get to the loo. If you’re driving and they say this, think fast and drive to the nearest loo. If you’re in a queue, they go first. Don’t decide to just finish your conversation, don’t get in their way, just let them go. 4. Let them poop in peace. There is some unwritten female rule that when someone says, “I’m just going to the loo,” all women must answer, “Oh yeah, me too.” Then you all go together and feel united in your femininity. Maybe guys do this too, I don’t know. But for your friend with Crohn’s, this might not be great. They’ve got stuff to do in there, it might take some time, it might be noisy, it might smell. You know what, they can probably handle it alone. In fact, it would likely be less embarrassing for them if you didn’t follow them in, wait outside, have a conversation with them and generally be there while they butt vomit into a toilet. It’ll be a shame to break the sacred toilet gathering, but your friend will silently thank you. 5. Let them make mistakes. Remember how you drank a bottle of wine, followed by the mystery cocktail and then spent the next morning groaning in bed?  Well, that’s similar to the time your friend with Crohn’s ate the delicious sweetcorn knowing full-well that it would hurt them, devoured it with reckless abandon and then spent three hours curled up in a ball on the sofa silently sobbing to themselves. Just because your friend has a disease doesn’t mean they’re any less ridiculous than the rest of us. Sometimes, the temptation is too much to bear. You know what, it’s their body, their time curled up in a ball and their decision. Let them make it and be there with a hot water bottle afterwards. 6. When they’re in pain, be practical. Pain can make it difficult to think straight. If your friend is in pain and curled up then see if they need these things: water and pain medication, a hot water bottle, blanket, a bowl in case they might be sick, peace and quiet, or company. A hot bath can also help if the pain isn’t too bad. If they’re clearly in severe pain then ask if they need you to call a doctor, or take them to an emergency room. If they’re in severe pain or vomiting, and struggling to answer your questions, then it’s probably a good idea to get some medical attention – but always ask them first. Please don’t panic, just try and help them to get comfortable. If they end up asleep, smiling or can move away from the sofa, then you’ve done a great job. 7. Check in and find out how they really are. It’s easy to hear your friend talk about all that’s going on with them without really hearing them. What are they saying to you? How would you feel in their position? There is a lot of pressure on people with chronic illness to push through and pretend things are going OK, even when they’re struggling. Make time for your friend and ask them how they’re coping. 8. If they’re struggling, offer to help them. So, you pop round your friend’s and you see their house is a mess, the washing is piled high and they’ve got no food in the fridge. If they usually cope well and recently they’ve started to let things slip, it’s a good sign that they may be too unwell to keep up with day-to-day tasks. There’s noneed to make a big deal about it, just take them to the shop when you go, orask if they need a hand with the washing. It can be hard to admit it when you need help, but someone offering without judgement can make it that much easier. 9. If they have an accident, don’t overreact. Crohn’s is a rubbish disease. One of the things that is most difficult to deal with is that sometimes you don’t reach the toilet in time and you have an accident. There’s no way to sugar coat it, it’s embarrassing.  It’s probably one of the things that people with Crohn’s fear most. If your friend has an accident while they’re out with you, stay calm and be practical. Get them to a private place where they can sort themselves out. Try and use your initiative. What do they need? Run to a store and get the things. Think wet wipes, change of clothes, and a plastic bag. But most of all, let them know it’s OK. It doesn’t change anything, they’re still awesome. They’re still amazing and you love them just the same. 10. Look after yourself first. First and foremost, you’re a friend. You’re not a carer, you’re not a parent, you’re a friend. The quickest way to make someone feel like a burden is by making them a burden. So, take care of yourself first. Support your friend in a way that seems natural to you. Do it because you love them and because you enjoy spending time with them. Remember, it’s easier for your friend to ask for help and support if they know you’ll say “no” if it’s too much. If being there for your friend feels overwhelming or difficult, it probably isn’t going to benefit either of you. 11. Let them support you too. Often people say, “I can’t believe I’m telling you this when you have so much on.” But, your friend will still want to hear your stuff. Just talk to them like you always have done. 12. Finally, have fun with them. Your friend with Crohn’s is just that, your friend who happens to have a disease. They are a friend first. If they’re struggling to do the things you usually do together, find ways to have fun together that they can enjoy.  Can’t shop for hours? Maybe just go for an hour. Struggling to leave the house? Go round and watch a movie. Can’t go out drinking right now? Go to them and have a pamper session. It doesn’t matter what you do, just do it together, enjoy each other – that’s why you became friends in the first place. Because they’re great, you’re great and you’re even better together. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: tomap49

Parents: Don't Share Sensitive Photos of Your Kids With Disabilities

The photo albums sit in a drawer in my office. Some of them depict a happy little girl playing with a ball, riding a horse, splashing in the pool with her mommy and daddy holding her. But mixed in with them are some not-so-happy ones. A little girl in a body cast, a blanket barely covering the cutout of her behind, and not hiding the white plaster immobilizing her legs. A little girl photographed by her own mother in a detached, clinical way to show how her body is misaligned due to cerebral palsy, her arms too stiff to reach above her head. There are whole binders, too, of instructions for different physical therapy procedures, each illustrated with a photo of the girl’s body posed just as it is “supposed to be.” She has stopped smiling by now. There were videos, but those are lost somewhere in the basement of her childhood home. They show various exercises as her mother and physical therapist describe them, and she periodically interrupts to provide a mocking narration of the proceedings. The teen girl who hated her body and wore loose black t-shirts every day was forced to wear a bikini top and shorts, so those looking at the photos and videos later could see how to push and pull her into the “right” positions. The little girl was me. And those photos are mine. Mine to keep or burn, mine to choose who can see them. Every time I look at many of them, I cry. I remember the pain after the surgery, but most of all I remember the itching under my cast, and how my parents held me as I screamed because I was so miserable. I remember the relentless physical therapy, the vain attempt to fix me long after I figured out that I wasn’t broken to begin with. I hate the photos of these moments, but I’m glad I have them. They’re a concrete reminder of what I experienced, validation of the depression and anger I struggled with as a teen and young adult, and context for understanding the body image issues I still live with today. These photos are an important part of my story, but they’re also violating, invasive and deeply personal. So I don’t share them, except with a few very trusted people. But as I sit here, a woman with cerebral palsy moving into middle age, I realize that despite all I went through, I’m lucky. The Internet didn’t exist when I was a child, so those photos remain analog, safe from strangers’ eyes. Many younger people with disabilities aren’t so lucky. I’ve seen so many parents sharing photos of their children’s surgical wounds, therapy sessions in which their child is clearly miserable, and even videos of meltdowns, toilet training problems, and worse. I want to ask them why. Why did you share that? Why did you think it was OK to share such an intimate, sensitive photo of your child without their consent? The Internet is forever, and those photos will haunt them long after their injuries have healed and their tears have dried. Yes, we live in a world where people overshare about the tiniest details of their lives, but there’s a difference between someone choosing to share the gory details of their own surgery or filming themselves at a difficult moment, and a parent doing the same. Too often, parents share these types of photos not to help their child, but to make themselves feel better. It’s a way of saying look how hard things are for us, an appeal for sympathy. I understand it’s not easy to have a child with a disability; between the medical procedures and society’s prejudice, it can be overwhelming at times. Parents need support, and they need to talk to someone about what they’re going through and the images burned into their mind of their children in pain and struggling. There are places for that, forums where they can post semi-anonymously and the conversations can’t easily be linked to their child’s identity. But posting those images on social media, on a personal blog, or on a site with millions of viewers like The Mighty is harmful, and it can scar their child more permanently than any surgical procedure. Not all parents share sensitive photos of their children with selfish intent. Sometimes they’re intending to show that a situation can be difficult at first, but things get better. Sometimes they’re trying to remove stigma by talking openly about issues. And on the one hand, they’re right. There is absolutely no shame in having surgeries, scars, or therapies. But graphic photos of a child’s heart surgery, videos of an autistic child crying or looking lost in therapy, and other intense images can bring back traumatic memories. If a mother took photos of her son’s stitched back after his spina bifida surgery, they may be important for her to keep and remember, but they are not hers to share. They are hers to show to her son so he can understand where he came from, and when he is old enough, he can decide whether or not he wants to share them with the world. It should be his right and his alone. I understand making these kinds of decisions isn’t easy, and there are many gray areas. For example, if a child is injured and someone needs to be held accountable, sharing photos can put pressure on those responsible for seeing that justice is done. And I’m not suggesting that parents shouldn’t share any photos or only share happy moments. A non-graphic hospital photo of a child in bed resting, or getting gifts or a visit from family is OK. The picture of me above is one I feel comfortable sharing; although it brings back bad memories, it’s respectful of my body. I’m dressed as well as I can be under the circumstances, and I’m smiling. We shouldn’t have to censor our lives to make everyone in social media land think things are perfect. But there is a line between honesty and violating someone’s bodily integrity and privacy, and we should do our best to find it and honor it. In our society we talk a lot about children with disabilities, and sometimes about elderly people with disabilities. Those of us in the middle, adults in our 20s, 30s, 40s, and 50s who’ve been disabled since childhood sometimes get forgotten. We go through a process of acceptance throughout our lives, trying to come to terms with what we went through as children. It can help us to have sensitive pictures, to understand where we came from and to consider how our parents felt and what they went through. But decisions about whether and when to share sensitive disability images should belong to the person in the photo, and them alone. Please don’t share sensitive photos of your child with a disability. One day, your child will thank you. Follow this journey on Free Wheelin’. We want to hear your story. Become a Mighty contributor here. Photo by contributor.

Parents: Don't Share Sensitive Photos of Your Kids With Disabilities

The photo albums sit in a drawer in my office. Some of them depict a happy little girl playing with a ball, riding a horse, splashing in the pool with her mommy and daddy holding her. But mixed in with them are some not-so-happy ones. A little girl in a body cast, a blanket barely covering the cutout of her behind, and not hiding the white plaster immobilizing her legs. A little girl photographed by her own mother in a detached, clinical way to show how her body is misaligned due to cerebral palsy, her arms too stiff to reach above her head. There are whole binders, too, of instructions for different physical therapy procedures, each illustrated with a photo of the girl’s body posed just as it is “supposed to be.” She has stopped smiling by now. There were videos, but those are lost somewhere in the basement of her childhood home. They show various exercises as her mother and physical therapist describe them, and she periodically interrupts to provide a mocking narration of the proceedings. The teen girl who hated her body and wore loose black t-shirts every day was forced to wear a bikini top and shorts, so those looking at the photos and videos later could see how to push and pull her into the “right” positions. The little girl was me. And those photos are mine. Mine to keep or burn, mine to choose who can see them. Every time I look at many of them, I cry. I remember the pain after the surgery, but most of all I remember the itching under my cast, and how my parents held me as I screamed because I was so miserable. I remember the relentless physical therapy, the vain attempt to fix me long after I figured out that I wasn’t broken to begin with. I hate the photos of these moments, but I’m glad I have them. They’re a concrete reminder of what I experienced, validation of the depression and anger I struggled with as a teen and young adult, and context for understanding the body image issues I still live with today. These photos are an important part of my story, but they’re also violating, invasive and deeply personal. So I don’t share them, except with a few very trusted people. But as I sit here, a woman with cerebral palsy moving into middle age, I realize that despite all I went through, I’m lucky. The Internet didn’t exist when I was a child, so those photos remain analog, safe from strangers’ eyes. Many younger people with disabilities aren’t so lucky. I’ve seen so many parents sharing photos of their children’s surgical wounds, therapy sessions in which their child is clearly miserable, and even videos of meltdowns, toilet training problems, and worse. I want to ask them why. Why did you share that? Why did you think it was OK to share such an intimate, sensitive photo of your child without their consent? The Internet is forever, and those photos will haunt them long after their injuries have healed and their tears have dried. Yes, we live in a world where people overshare about the tiniest details of their lives, but there’s a difference between someone choosing to share the gory details of their own surgery or filming themselves at a difficult moment, and a parent doing the same. Too often, parents share these types of photos not to help their child, but to make themselves feel better. It’s a way of saying look how hard things are for us, an appeal for sympathy. I understand it’s not easy to have a child with a disability; between the medical procedures and society’s prejudice, it can be overwhelming at times. Parents need support, and they need to talk to someone about what they’re going through and the images burned into their mind of their children in pain and struggling. There are places for that, forums where they can post semi-anonymously and the conversations can’t easily be linked to their child’s identity. But posting those images on social media, on a personal blog, or on a site with millions of viewers like The Mighty is harmful, and it can scar their child more permanently than any surgical procedure. Not all parents share sensitive photos of their children with selfish intent. Sometimes they’re intending to show that a situation can be difficult at first, but things get better. Sometimes they’re trying to remove stigma by talking openly about issues. And on the one hand, they’re right. There is absolutely no shame in having surgeries, scars, or therapies. But graphic photos of a child’s heart surgery, videos of an autistic child crying or looking lost in therapy, and other intense images can bring back traumatic memories. If a mother took photos of her son’s stitched back after his spina bifida surgery, they may be important for her to keep and remember, but they are not hers to share. They are hers to show to her son so he can understand where he came from, and when he is old enough, he can decide whether or not he wants to share them with the world. It should be his right and his alone. I understand making these kinds of decisions isn’t easy, and there are many gray areas. For example, if a child is injured and someone needs to be held accountable, sharing photos can put pressure on those responsible for seeing that justice is done. And I’m not suggesting that parents shouldn’t share any photos or only share happy moments. A non-graphic hospital photo of a child in bed resting, or getting gifts or a visit from family is OK. The picture of me above is one I feel comfortable sharing; although it brings back bad memories, it’s respectful of my body. I’m dressed as well as I can be under the circumstances, and I’m smiling. We shouldn’t have to censor our lives to make everyone in social media land think things are perfect. But there is a line between honesty and violating someone’s bodily integrity and privacy, and we should do our best to find it and honor it. In our society we talk a lot about children with disabilities, and sometimes about elderly people with disabilities. Those of us in the middle, adults in our 20s, 30s, 40s, and 50s who’ve been disabled since childhood sometimes get forgotten. We go through a process of acceptance throughout our lives, trying to come to terms with what we went through as children. It can help us to have sensitive pictures, to understand where we came from and to consider how our parents felt and what they went through. But decisions about whether and when to share sensitive disability images should belong to the person in the photo, and them alone. Please don’t share sensitive photos of your child with a disability. One day, your child will thank you. Follow this journey on Free Wheelin’. We want to hear your story. Become a Mighty contributor here. Photo by contributor.

Naomi Care

Crohn's Disease: What to Know About Your Friend With Chronic Illness

This is a difficult article to write simply because it could be easy to interpret it in the wrong way: “Oh, so you don’t appreciate our help,” “You know, we are trying,” “It’s not all about you – we have lives to live, too.” I know my friends would not say these things, and they probably don’t think these things, but living with a chronic illness can make you feel like you are disposable. After all, if I abandon you then you can continue living just as you were. You’ll find new friends and you can move on. But, if you abandon me, well. I don’t have the same capacity to meet people, to form new friendships, to continue old ones. I am at your mercy. I can’t join your world, so I am left hoping you’ll continue to visit me in mine.   If there was one thing I wish my able-bodied friends understood it would be: I am, to a degree, dependent on you to come to me. For example, today is my second day out of the hospital. My friends are going for a meal out and they want me to join. They’ve checked – thefood I can eat is on the menu. Why not come, it would be good for me? But what they don’t understand is it isn’t that easy. Fresh from the hospital, I may look the same but my body is tired. I can’t walk as far, I can’t manage social interaction for more than 30 minutes. I can eat again, but before I got home I was nil by mouth for more than 60 hours to clear a bowel obstruction. I cannot eat large portions of food until I know I won’t become obstructed again. So, they’ll go off and have fun. Then they’ll return, more food, morelaughs. And I’ll feel a bit more alienated. I’ve ended up spendinganother day alone. You might say it was my choice, but this does not feel like a real choice. I think summer is harder. It’s hard seeing all my friends go off on holidays, form new relationships, get new jobs, move away and start families when I’m stuck at home trying to entertain myself. “You should come,” they say, running off into the sunlight. It isn’t that easy. I remember one friend of mine was upset because their holiday was cancelled last minute and they had to spend nine days at home. They moped for the weeks running up to it about how unfair it was, then spent the week seeing friends and went back to work. What they didn’t realize was they were entering my world for nine days. They were entering the space I’ve been sitting in for almost a year for nine days. And they couldn’t hack it. What frustrates me the most is I know if many of my friends went into the hospital, they would expect different treatment. They’d be upset if all their friends went for a meal without them once they were out. For them, being in the hospital would trigger a mass outpouring of concern and help. But me, well, for me it’s “normal.” “It’s not the same.” “I’m used to it.” Let me tell you – you do not get used to the hospital. You do not get used to the pain. The boredom does not become more tolerable and the loneliness isn’t easier to bear. It gets harder, it adds up, it piles on and makes life that much harder to get on with. But, like a soap opera that drags on for too long, people get bored. They want something new. Meanwhile, I’m left to get on with it like I have for 15 years. Like I’ll be forced to for the rest of my life. And, childish as it sounds, it is not fair. It is not fair that you get to go and live your life while I’m put on hold. It is not fair that your difficulties, however minor, are treated with so much more concern than mine. And, it is not fair that I feel I have to quiet my story to make it easier for you totolerate. Because, frustrating as it is, my choices are not your choices. I need you more than you need me. And it’s me that needs to work out how to make this work, not you. I wish you understood that. I wish you knew our friendship is like that between two birds, one in a cage and one out free. If the free bird doesn’t visit the caged bird, the caged bird can do nothing but hope, and wait, and sing out for the free bird. Well, this is me singing. The song might not be pretty, but it’s my song. How will the free bird respond? We want to hear your story. Become a Mighty contributor here. Thinkstock photo via IgorKrapar.

Naomi Care

12 Ways You Can Support Your Friend With Crohn’s Disease

You have a friend and one day they tell you they have Crohn’s disease. Or maybe you’ve known for ages, but it’s only been recently that they’ve started to struggle more. Either way, because you’re a kind and decent human your main question is, “How can I support my friend? What do I do?” First of all, Crohn’s disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. Symptoms often include abdominal pain, diarrhea, fatigue and weight loss. Think of it as having about of food poisoning that stays with you for the rest of your life. Some people have next to no symptoms for years, while others have severe symptoms that can greatly impact their lives. It’s unpredictable, chronic, and can be difficult to talk to people about. Once you’ve worked out what Crohn’s is, that it’s not contagious, and that you can’t cure it through (insert spurious cure here), you’re ready to step up into finding genuine ways to help your friend. From over a decade of experience, here’s what has helped me: 1. Be there. The most important thing is to be there for them, be their friend. You’ll make mistakes, but they will too. One night you might share your popcorn with them and send them to the emergency room – oops. But hey, they missed your birthday party, again. It’s ok to say the wrong thing, do the wrong thing or feel a little unsure. All friendships can be a bit like that, but I promise it is better to hang in there and make a few mistakes than it is to disappear. 2. Accept they may miss your important things. Sometimes, when Crohn’s is flaring, or even when it is in remission, it can be very difficult to stick to plans. This can be because of fatigue or because your friend is stuck on the loo, or a myriad of other plan ruining symptoms. It can be incredibly frustrating for both of you. It’s even worse when it happens a lot. The best thing you can do is understand that they are trying, accept that this time they might not be there and will try again a different day. No matter how frustrating it is for you, it’s probably worse for your friend who is feeling unwell, upset they let you down, and angry that their body won’t let them do what’s important to them. Let them know it’s OK. 3. If they say they need the loo, they need it now. Not in 10 minutes, not just after you’ve finished applying your eyeliner – now. If you love your friend, like them, or even have some basic human respect for them, let them get to the loo. If you’re driving and they say this, think fast and drive to the nearest loo. If you’re in a queue, they go first. Don’t decide to just finish your conversation, don’t get in their way, just let them go. 4. Let them poop in peace. There is some unwritten female rule that when someone says, “I’m just going to the loo,” all women must answer, “Oh yeah, me too.” Then you all go together and feel united in your femininity. Maybe guys do this too, I don’t know. But for your friend with Crohn’s, this might not be great. They’ve got stuff to do in there, it might take some time, it might be noisy, it might smell. You know what, they can probably handle it alone. In fact, it would likely be less embarrassing for them if you didn’t follow them in, wait outside, have a conversation with them and generally be there while they butt vomit into a toilet. It’ll be a shame to break the sacred toilet gathering, but your friend will silently thank you. 5. Let them make mistakes. Remember how you drank a bottle of wine, followed by the mystery cocktail and then spent the next morning groaning in bed?  Well, that’s similar to the time your friend with Crohn’s ate the delicious sweetcorn knowing full-well that it would hurt them, devoured it with reckless abandon and then spent three hours curled up in a ball on the sofa silently sobbing to themselves. Just because your friend has a disease doesn’t mean they’re any less ridiculous than the rest of us. Sometimes, the temptation is too much to bear. You know what, it’s their body, their time curled up in a ball and their decision. Let them make it and be there with a hot water bottle afterwards. 6. When they’re in pain, be practical. Pain can make it difficult to think straight. If your friend is in pain and curled up then see if they need these things: water and pain medication, a hot water bottle, blanket, a bowl in case they might be sick, peace and quiet, or company. A hot bath can also help if the pain isn’t too bad. If they’re clearly in severe pain then ask if they need you to call a doctor, or take them to an emergency room. If they’re in severe pain or vomiting, and struggling to answer your questions, then it’s probably a good idea to get some medical attention – but always ask them first. Please don’t panic, just try and help them to get comfortable. If they end up asleep, smiling or can move away from the sofa, then you’ve done a great job. 7. Check in and find out how they really are. It’s easy to hear your friend talk about all that’s going on with them without really hearing them. What are they saying to you? How would you feel in their position? There is a lot of pressure on people with chronic illness to push through and pretend things are going OK, even when they’re struggling. Make time for your friend and ask them how they’re coping. 8. If they’re struggling, offer to help them. So, you pop round your friend’s and you see their house is a mess, the washing is piled high and they’ve got no food in the fridge. If they usually cope well and recently they’ve started to let things slip, it’s a good sign that they may be too unwell to keep up with day-to-day tasks. There’s noneed to make a big deal about it, just take them to the shop when you go, orask if they need a hand with the washing. It can be hard to admit it when you need help, but someone offering without judgement can make it that much easier. 9. If they have an accident, don’t overreact. Crohn’s is a rubbish disease. One of the things that is most difficult to deal with is that sometimes you don’t reach the toilet in time and you have an accident. There’s no way to sugar coat it, it’s embarrassing.  It’s probably one of the things that people with Crohn’s fear most. If your friend has an accident while they’re out with you, stay calm and be practical. Get them to a private place where they can sort themselves out. Try and use your initiative. What do they need? Run to a store and get the things. Think wet wipes, change of clothes, and a plastic bag. But most of all, let them know it’s OK. It doesn’t change anything, they’re still awesome. They’re still amazing and you love them just the same. 10. Look after yourself first. First and foremost, you’re a friend. You’re not a carer, you’re not a parent, you’re a friend. The quickest way to make someone feel like a burden is by making them a burden. So, take care of yourself first. Support your friend in a way that seems natural to you. Do it because you love them and because you enjoy spending time with them. Remember, it’s easier for your friend to ask for help and support if they know you’ll say “no” if it’s too much. If being there for your friend feels overwhelming or difficult, it probably isn’t going to benefit either of you. 11. Let them support you too. Often people say, “I can’t believe I’m telling you this when you have so much on.” But, your friend will still want to hear your stuff. Just talk to them like you always have done. 12. Finally, have fun with them. Your friend with Crohn’s is just that, your friend who happens to have a disease. They are a friend first. If they’re struggling to do the things you usually do together, find ways to have fun together that they can enjoy.  Can’t shop for hours? Maybe just go for an hour. Struggling to leave the house? Go round and watch a movie. Can’t go out drinking right now? Go to them and have a pamper session. It doesn’t matter what you do, just do it together, enjoy each other – that’s why you became friends in the first place. Because they’re great, you’re great and you’re even better together. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: tomap49

Naomi Care

How It Feels When You're Running Out of Treatment Options

Throughout my life, I never feared my illness because there was always a next step. I knew that whatever happened there would be a way to make me feel better. But what happens when that safety net falls away? That’s where I find myself, sitting across from my consultant who I now see more than most of my friends, watching his face frown as he reads my notes. “So, we’ve tried all the conventional therapies; unfortunately you didn’t respond to your last drug. What happened when we added the biologic?” “My arm swelled up.” He looks up at me. “Swelled, you mean it actually swelled up?” “Yup,” I sigh. He scribbles on the paper and frowns a bit more. I start twiddling my bracelet, wishing I could somehow be in a different place with a different body. I don’t want to hear what he’s going to say next, because I know where I am now and so does he. I’m now going through the screening process for a clinical trial, and if I get on it I’ll be the first person in Europe enrolled on the study. I’m hoping that reflects more on the foresight of my clinical team than on the precariousness of my situation. I might be on a placebo, I might not, but it’s a shot. It’s something to try. There might be serious side effects, there might not be, but we hope there won’t be. No one can predict the outcome. I’m enrolling on a gamble. The uncertainty is difficult to bear. I was once top of my class at university, first class, then a distinction, high flying jobs and relatively well. I struggled, but I competed with and surpassed my cohort. I was bright, energetic and excited about my future. Now, where am I? I’m celebrating the days I get out of the house, it’s a triumph when I do an hour of work. My deposit for the house that I’d been saving for is slowly being spent on keeping me afloat while I wait to be able to work again. If I’m able to work again. People ask me what my plan is for the future. How can I answer that when there’s no certainty about how I will feel in the next month, let alone the next year? How can I plan when the biggest variable in the equation, what I am capable of doing, changes dramatically from year to year and has proven to be set on remaining frustratingly low? Even the bigger life questions, like relationships and children, seem to be dictated by my ever-failing body. How to date when I end up canceling more times than not, or when dating me ultimately means that my partner will be signing up for a much more tricky life than they could have had? I am not writing this out a of a sense of self-pity (though there is an element of that), but to explain to those without chronic illness what can happen when your options are taken away from you. And, I suspect that underground, there are many of us with invisible illnesses in a variety of precarious positions. I suspect we all wear a strong smile on our faces and appear happy and fulfilled while we struggle each day with diminishing choices. I write in solidarity with you, because I’m learning how difficult that journey is to take. I’m realizing how little support there is for the young, visibly healthy people who may never be able to play the game with the same chances their well counterparts have at their disposal. And I am learning that I live in a society where those around me are far more concerned with catching the fakers than helping those who have a lifetime of fighting ahead of them. That’s the hand I’ve been dealt. Somehow, I need to find a winning hand in this mess. But, this is the first time in my life when I’m beginning to fear I’m not going to turn up trumps. And that scares me more than anything I have faced before. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by KatarzynaBialasiewicz

Naomi Care

Maintaining Purpose With Chronic Illness

I know the message we’re all used to: “Yes you can!” We’re told that if you try hard enough, have enough willpower and continue to push through, you can do anything you want. I would love it if that were the truth, but when you have a chronic illness, unfortunately there are times when your body simply won’t let you keep going. Sometimes you have to rest, and that rest can be a period of weeks, months or years. So what can you do? How can you spend each day in your room and maintain a sense of purpose and dignity? More importantly, how can ensure that your life continues to be engaging and meaningful to you? Here’s what I’ve learned: 1. Keep your mind alive. Sometimes I have awful brain fog, so even this isn’t always possible. But I try as much as I can to keep myself engaged in the world around me. What are you interested in? Try and find out as much as you can about it. On a bad day for me, that can mean watching the news and letting the words pass over me. On a good day, that can mean reading a book I’m excited about, finding some journal articles from Google Scholar and checking out the latest research (I have a love of anthropology) or revisiting old science textbooks and reminding myself what the periodic table was all about. You’re intelligent, you have value and if you prod your brain in even the smallest ways it will keep ticking over. 2. Set small goals. On most days I can only do one thing. That might be making a meal, it might be making my bed. But doing that one thing can help me to maintain a sense of purpose. I often can’t do it all in one go. For a meal, in the morning I might peel the vegetables, then after a rest I’ll be OK to brown the chicken. Finally I might have the energy to get a stew in the oven. I don’t mind if it takes me all day to make that meal. Once it’s the evening and I’m eating something delicious I’ll be proud. That’s enough for me. 3. Stay creative. I’ll admit I’ve lost some of my creative flare; it’s hard to think about artistic projects when I’m in pain and tired. But there are still some things I can do. Completing something small, like an adult dot-to-dot takes up time and can be a form of meditation. It slows things down and allows me to concentrate on something physical in a way that watching TV simply doesn’t allow. Lino cutting, doodling or simply looking through art books can be enough to remind me that I am more than a struggling body. Keri Smith’s books have small projects that can take minutes or hours, depending on how you feel. Sometimes my brain isn’t awake enough to have an idea but once I have a prod then I can run with it. Creating something, even something formulaic, helps you see what you’re capable of and, once you have a few things you’ve made, it gives you a bank of things to show you that you’re so much more than you imagined. Remember: “Creativity takes courage.” –Henri Matisse 4. Write as much as possible. It may not feel like what you’re going through is significant; however, each day you push through and continue until the next will change you. Each day that is desperate and each day you find joy will mean that you have distinct experiences that can help others. You might not want it or have asked for it, but you’re developing a voice. Write down your voice. You can journal, write short stories, poems – write anything. Don’t do it for anyone else, do it for yourself. By writing, you show that you value yourself, that what you say is important and that you are worth investing in – and that’s valuable. “Writing… is an act of faith: I believe it’s also an act of hope, the hope that things can get better than they are.” – Margaret Atwood 5. Leave the house. My current goal is to walk 5,000 steps a day. Most days I don’t manage it, but on the days I do I feel invincible. I know I used to row, I know I used to run, but right now I’m walking and that’s something. On the days I can’t walk far I make sure I leave the house. It helps change my environment, it gives me some fresh air and allows me to see things I might have missed. Whatever your reason, try and get out a bit. It helps. 6. Connect with others. If you can’t get out easily, tell people. I’ve learned that friends and family don’t always understand how hard it is to go out and meet them, but if I tell them and explain why it’s difficult, they do make the effort to come and see me. Some weeks are fuller than others, but phone calls, Facebook messaging or writing letters are the things that keep me going. Your friends can remind you of your value, even when you can’t see it. 7. Be kind to yourself. This might be the hardest one, but be kind to yourself. You’re doing the best you can in difficult circumstances. Did you manage to get out of bed today? Great! You’ve been brilliant. Did you stay in bed and watch Netflix all day? Maybe that’s just what you needed. Learn to read what your body needs you to do and then celebrate when you give your body what it wants. Having a chronic illness can be a full-time job; your job is to be your best nurse, look after yourself, care for yourself and encourage yourself all the way. I promise, you’re doing far better than you believe. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via sunemotion.

Naomi Care

Why Giving Advice About My Crohn's Disease Isn't Helpful

This week I found out that I had failed the last available drug licensed for Crohn’s disease in my country. This means that I am now at the mercy of off-label treatments while waiting for a new drug to become available. This means, that while my gastroenterologist will try everything he can to improve my quality of life, I’ve now run out of options that are reasonably expected to work. For me, this means becoming used to a level of disability that I do not welcome for the foreseeable future. When I shared this news with friends I was surprised by their responses. I’m not sure what I was expecting. I suppose I was hoping for a level of empathy and a feeling of support; I wanted to know I am not alone in this. I’m fortunate that some friends provided just that response. But, overwhelmingly, I was met with “helpful” suggestions to cure my Crohn’s. These included: “Have you tried a vegan diet, it worked really well for me.” “Essential oils might work, here’s a link where you can buy some.” “I’ve got a friend with Crohn’s and know it can be managed, is there a self-help group you could go to?” This was coupled with a wealth of articles sent to me promising “cures” for my disease. Each cure was a medicine I had tried, an alternative therapy that had no medical backing (that I had likely tried, too) or some new diet. Instead of feeling supported, I felt dejected and alone. As someone who has battled with a chronic illness for over a decade, these types of responses are not new to me. What surprised me was that they were coming from people who had seen me struggle for years and who still seemed to have very little idea what my disease is or how it affects me. I wanted to share why “helpful” suggestions are often not helpful and offer an alternative; I know advice comes from a place of caring, but I need you to know that can hurt. Here’s why: 1. It shows you are not listening to the reality of my situation. If I come to you with my thumb cut off and you offer me a standard plaster, it clearly shows that you’ve misunderstood my situation. What I need is a lift to A&E and some pretty immediate first-aid. When I come to you and tell you I’m out of treatment options, that I feel terrible and that I can no longer lead the life I previously enjoyed, you suggesting that I take essential oils is the same as offering me a standard plaster. It completely ignores the reality of my situation. 2. It subtly suggests my illness is my fault. When you say “have you tried this diet, it cured this person” what you’re saying is that there is a cure and that if I tried this cure I wouldn’t continue to live with this illness. Crohn’s, like many chronic illness, cannot be cured. I can promise you, I have tried everything I can think of to improve my situation. Every single day is a battle to improve my health. If you knew how many things I have tried, elemental diets, liquid diets, FODMAPs, Lofflex, paleo, probiotic and a myriad of bizarre mixes prescribed by “nutritionists” you may not be so quick to suggest another “cure.” Trust me, I’ve tried it and whatever it is you’ve found will not cure Crohn’s. It hurts to hear the subtle suggestion that I’ve let half of my life be dictated by a disease when I could have just taken some omega-3 tablets and been fine. 3. It’s about you. If I say your suggestion probably won’t help improve my condition and your response is to be hurt or offended, then that shows your advice was to make you feel better, not me. 4. It makes others believe your “cure” might work. Unfortunately, people aren’t always the best at doing research. We all want to believe that people’s problems can be fixed quickly and easily — it makes us feel safer. So, when people see your post suggesting my illness can be cured by taking slippery elm, they may take a sigh of relief, because that’s one problem off their list. Your post can help perpetuate myths around chronic illness and mean more people fail to understand the impact and difficulties that goes along with living with one. 5. It moves the conversation away from my situation and into a conversation about the merits of your “cure.” If I’ve told you some big news about my health, or even some small news, what I’m saying is that something is going on in my life and it’s impacting me. I’m reaching out, I’m asking for support. I’m trying to share with you what my life is like right now. Some days, support from other people is all that keeps me going, if I’m telling you things are getting difficult, that means that I might need help. By telling me about your new “cure” you effectively shut down the conversation. I can no longer tell you about how I feel, because if I tried what you offered my problem would go away. Suddenly, I’m placed in a position where I can no longer expect empathy and a listening ear but, instead, must go off to Holland and Barrett to buy a case of turmeric pills. 6. It puts more economic and emotional strain on me. Life costs me £550 more on average a month as someone who is disabled. Costs come from being unable to work, requiring specialist equipment, maintaining a specialist diet and from the costs of medicines and travel to appointments, to name a few. My finances and physical resources are spent on getting myself better. I see my consultant, my GP, I cook meals that I know I will be able to digest, I try and walk each day to stay healthy. They may seem like small things, but when you’re sick for a long period of time and suffer from fatigue, each little action takes a lot of effort. Your suggestion might seem easy to fulfill. Just another diet, just some more pills, just one more appointment. But, on top of what I’m already balancing, it may be incredibly difficult for me to include into my life. I may not have the money to fund it. Importantly, I may not have the emotional energy to invest in another “treatment” that I know is unlikely to work. 7. It reminds me of how alone I am in this. For me, what stings most about the advice I get is that it shows how little you understand my condition. Do you know what it is? Have you bothered to google it? When you suggest crystals to heal my Crohn’s, all that shows is that you fundamentally do not understand what I live with day by day. When that comes from a stranger, I can handle it. But when it comes from a friend, from someone who claims to care about me, I don’t understand why you haven’t tried to learn about something that has changed my life so much. If you want to learn, I can tell you. But when you offer advice that clearly demonstrates you are ignorant about my condition it reminds me that I’m alone; because the people around me don’t even understand the basics, let alone the complexities, of this disease. What helps: But, like I said earlier, I have got some amazing friends and family who do make a difference and offer great support. I wanted to share what they do and why it works, just in case someone else might benefit from their knowledge. 1. Listen to what I’m telling you. In order to support someone, you have to understand what they’re facing. There’s only one way to do that: listen to them. That means, listen to what they say, ask questions to clarify any misunderstandings and then listen some more. Once you know what their situation is you’ll be in a much better position to help support them. 2. Learn about their condition. Chronic illnesses can be complex. There’s a lot of medications, a lot of technical terms and a lot of bad research. It can be overwhelming navigating everything and it’s likely your friend or relative has been handling all this on their own. Become your friend’s research ally. The internet provides a wealth of brilliant and terrible information. Learn to be discerning. If they think it would be helpful, ask your friend to tell you what’s going on with their illness so you can find out more about how their illness affects them. Gain knowledge, weigh the evidence and learn to differentiate between sensationalist media and information that may offer real help. Information is power. 3. Offer practical help or support. Living with a chronic illness is tiring and stressful. It’s isolating. Each day I fight my body so that I can look after my basic needs. Cooking, cleaning, and keeping myself sane is about all I can do. I may look like I’m functioning well, but it’s taking everything I have to maintain that illusion. You can help! Ask me what I need. Find out what I can eat and make me a meal. Come ’round mine and watch rubbish movies with me. Offer to come to appointments. Take me to the shops. Even sending me a nice message over Facebook or a letter helps enormously. Anything that helps me feel cared for and supported is immensely appreciated. 4. Accept I may not get better. This is a hard one, but you may need to accept I may not get better. This isn’t a sprint, it’s a marathon. If you want to be in my life, you may need to learn to be a friend in a different way. There may never come the wonderful day when I have energy, when I can be what I once was, when I can offer the same practical support to you. But, my life still has meaning. I can listen to you, I can still be fun, I can offer a different insight in the world. I hope I’ll be better one day, but I might not, I’ve accepted that – you need to, too. 5. Remind me that I am so much more than my illness. My best friends, the ones I love the most, find ways for me to enjoy the world around me. They see what I’m passionate about, they see my limitations, and they find a way for me to enjoy my passions while acknowledging my limits. They get in their PJs with me and eat ice cream while we discuss politics and books. They plan trips in advance so I can make sure I have everything I need. They take me out my bedroom and into the big wide world. They remind me of my humanity. I love these people. I wouldn’t continue to survive without these people. If you can, be that person to someone. I promise, it’s worth the investment. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images