For day 3 of the Crohn’s and Colitis Awareness Week, I thought it would be appropriate to write about what we (IBD Sufferers) want the important people in our lives to understand because we love them and want them to know that even through illness that still remains. Except we may need a little more support and understanding at times.
So here is what we want you to know:
- We go through the frustrations of financial stress too. Infact its so frustrating that we cannot contribute as much as others, be it in a household or when it comes to gifts that it can make us even more unwell.
- We don’t have the choice of not being able to work. For many, the choice has been taken away. It is not a luxurious life style where we sit at home and enjoy life getting money for nothing! Being unwell is a full time job its self – taking medications regularly, trying to eat something each day, trying to keep hydrated, spending hours multiple times a day either sitting on the toilet and passing blood or vomiting. Others who have stomas can have multiple bag leaks, wound leaks, bleeding, blockages and active disease causing side affects such as fatigue, anemia and struggles with weight.
- This disease can make us feel isolated because many of us are house or bed bound. We rarely see the outside world unless it is to attend procedures, hospital admissions or hospital appointments.
- Because we look “OK” on the outside does not mean that we are! Some days it feels like we are dying because the pain is so intense. Can you look through the layers of our skin and muscles and see the inflammation or ulceration? NO.
- IBD is just as serious as Cancer, Heart Disease and other health conditions than cause life or death situations. We are at risk of just as much issues!
- IBD is NOT the same as IBS!! IBD stands for Inflammatory Bowel Disease which is disease of the organ or organs the disease affects causing inflammation, ulceration, anemia, weight loss, bloating, fissures, fistulas, abscesses and sickness, which is a life long illness. IBS stands for Irrital Bowel Syndrome and it is a syndrome of which the bowel is prone to cramping or trapped wind which goes away in a few hours or days.
- Those us who do work really struggle due to pain, sickness, fatigue, issues from medication such as insomnia, moon face, infections and weight gain or loss. Many also suffer from mental health issues and it’s a vicious circle of one setting off the other.
- We don’t love you or like you any less when we cancel last minute. Our health is so unpredictable! The symptoms can come on within such a quick amount of time that before we know it, it’s time to run to the toilet with severe cramps or having to vomit. The pain can come within a matter of minutes or when we are in pain daily, it can become worse in such a small amount of time.
- We miss the old life we had. We don’t expect you to know how this feels, we simply just need your understanding. We struggle to see friends and family moving on in life, having a family, buying a house or having a steady job. It is so frustrating that we can’t be there to share that with you or we are unable to see you. We cannot explain how it feels to loose who we once were and sometimes that may never go away so please know we find it hard to accept this too.
- We don’t deliberately miss nights out, parties or celebrations because we “can’t be bothered” it may just be that that day was one of our worst and a little understanding goes a long way!
- When we don’t message or call back – we are not ignoring you! Many of us have to take naps during the day and other times it’s because we are too sick to look at our phones.
- Just because we post photo’s on social media with makeup on doesn’t mean we haven’t had a bad day. A photo can hide so much.
- When you see us out of the house and we look “OK” it doesn’t mean we are. When people say “you look well so you must be doing better” is one of the worst thing you can say. We constantly battle with doctor’s who tell us that because we look OK, we somehow are.
- The smallest of things mean the most! When you hold our hand, when you give us a hug, the cup of tea made for us, getting a hot water bottle for the pain or a message to say you are there for us. That’s what we respect the most. We don’t want showered with sympathy or feeling sorry for us!
- Pyjamas are the most comfortable things to wear because of the bloating or pain. So we are sorry if we don’t look the part – you will have to accept it.
- Accept that we cannot change our illness, if we could then we would be better and do everything on our own.
- Even the strongest of us who suffer can struggle and so, we may not look like we need help but doing something small or offering means a lot!
- We are just as entilted to use disabled facilities as someone in a wheelchair or crutches. The judgement and embarrassment or upset we recieve when using facilities available to us is awful. We get “tutted” at and questioned as to why we are using them!
- Anxiety and Depression can cause our flares to be worse but it can also be a struggle for us to cope. Its a daily battle with physical and mental pain. We mat disappear for a few days socially and that’s because we need time out from time to time.
- Fatigue isn’t just being a bit tired – it’s consuming exhaustion that you can’t shake off. It affects your body and also the mind, where we get “brain fog” meaning we can’t concentrate or remember things.
- It isn’t “all in our heads”. The mental health stigma can mean that sometimes doctors will question if we are really unwell or if it’s our mental health when it is NOT.
- There is no cure. Juice plus will not cure us, using illegal substances will not cure us and dieting pills or certain diets will not cure!!
- At times it can be hard for us to only exist and not live our lives – if we get up and shower then we are trying to do our best.
- Travelling can be difficult when we have to go somewhere. Please understand that we don’t want to have to keep making pit stops for the toilet. We would rather be the person waiting for the toilet than the person who has to go so many times!
- Many of us have to recieve operations and temporary or permanent stomas. If we have any of these, please respect our recovery process. We may have leaks and when we do please don’t freak out and make us feel bad for something out of our control. The anxiety after a bag leak will always linger – “when will the next one be?”
- For those us who have had Ulcerative Colitis and no colon does not mean that because we have no active disease present does not mean we do not have other side effects that come hand in hand with IBD!
It can be difficult for others who do not suffer to understand where we are coming from. Raising awareness, talking to your close ones and showing them is a much better approach than getting frustrated however when we do this we want you to listen and try to understand we are explaining to help you help us. To be a team. So many of us loose friends, family and partners due to lack of understanding and judgement and the affects are devastating. Before you judge or question our illness, please make sure you know the facts. Those of you who stay with us through the bad days will enjoy the good ones with us if and when we ever get one! 😁
It takes just a few minutes to read up about Inflammatory Bowel Disease. It takes a kind heart and good person to try to understand and for that we are thankful.
You are just amazing xxx I think your so strong x
Thankyou Lija! All who suffer are strong and glad I can be part of such an amazing community! xx