By Laura McCafferty (she/they)
I was diagnosed with Ulcerative Colitis (UC) at the age of 16 after falling ill with my first flare. UC is a form of Inflammatory Bowel Disease (IBD) and is an inflammatory condition that causes ulcers, which can bleed and produce mucus, to form in the large intestine. It is currently incurable but can be managed with multiple medications. It does, however, relapse (flare) frequently where symptoms become more apparent and require further treatment.
Many disabilities and illnesses, such as UC, can embarrassing to talk about; talking about your bowel habits with others is often not deemed socially acceptable. As a young person, it can be hard to convey the concepts of a ‘chronic’, ‘lifelong’, and ‘incurable’ condition to other people, as these terms are often only associated with those of older age. It also takes a lot to admit weakness and ask for help, something I found myself to struggle with.
However, despite these barriers, it can be useful to talk about a disability or chronic illness with others. Talking can lead to a greater understanding and awareness of disabilities and chronic illnesses in society, meaning more support will be available for those who need it. Talking with friends can be helpful emotionally, and physically as they are often more than willing to provide help if you need it or just someone to talk to.
I have never been good at disclosing my problems to others and when I was diagnosed, I had been dodging questions about my repeated absence from school for months. However, the diagnosis of a lifelong condition meant I now had to accept that the problem wasn’t going to go away. This meant I was going to have to talk, about an issue I myself didn’t fully understand, nor had fully come to accept, to my family, friends, teachers, and anyone else who believed they had a right to know.
In the beginning I found it difficult to start conversations with those I needed to tell about my UC and often only spoke if I was asked a question that allowed me to talk about my illness. The term ‘ulcerative colitis’ was often met with blank stares, to which I would follow with “it’s kind of similar to Crohn’s, if you’ve heard of that”, to which people would nod, as they often had heard of Crohn’s but only because the name didn’t sound like it was picked straight out of a medical textbook. I often left the conversation at that, with the person only knowing that I had some disease that they couldn’t remember the name of, and myself left without the extra support I needed. Through my time with UC, I have learnt how to be more open about my illness and have learnt a few things about how to talk about a disability or chronic illness with friends which I have shared below. I have also listed a few points on how to support a friend that has a chronic illness or disability.
How to go about talking with friends
1. Decide who to tell
Understand first that your disability or illness is personal to you and you do not have to tell anyone you don’t want to.
When you feel comfortable, I recommend starting with a few close friends in a place where you feel comfortable, for example your own house or a local café.
2. Prepare what to say
It can be useful to prepare something to say beforehand, for example, your diagnosis and a short description of what this means for you. I recommend being as open as you feel comfortable with as, in my experience, the more your friends know the more they can help you out!
3. Be prepared for questions
People are curious by nature and will want to ask questions. They are not trying to pry and be nosy but simply want to understand you and how your disability or illness affects you. However, do not feel you have to answer anything you are uncomfortable with and feel free to guide friends to websites or videos if that is easier.
4. Let you friends know how to help you
Your friends will want to help you out but may not be sure how. It can be useful to therefore let them know how you would like them to support you. This may include walking slower at times or understanding when you cancel plans.
5. Help your friends understand
It can be difficult as a young person to understand many of the things living with a disability or chronic illness entails if you are not affected personally. It can therefore be useful to show your friends websites or videos that explain your disability or chronic illness. For example, Crohn’s and Colitis UK is a charity that work to raise awareness of IBD and have many useful resources. The charity also has an app called ‘In My Shoes’ that can show others what life with Crohn’s or Colitis is like. Many charities and resources exist to make it specific for you.
Metaphors such as the ‘Spoon Theory’ can be useful to help others understand fatigue and its impact on daily life. It uses spoons to represent energy, with daily activities costing spoons. Those living with chronic illnesses and disabilities are said to have limited spoons and therefore can struggle to complete daily tasks.
6. Talk to others with similar experiences
It can be helpful to talk to people who also live with disabilities or chronic illnesses, as they are more likely to understand your situation. There are many charities that organise meet ups where people can chat with others who have lived through similar situations.
How to Support a Friend
It can be difficult to support a friend who has recently been diagnosed or told you about their disability or chronic illness. The important thing is to listen to your friend and let them know you are there to support them.
1. Let your friend go at their own pace
Understand that your friend may be uncomfortable or embarrassed talking about their disability or chronic illness and may not be ready to talk in depth yet. If this is the case, let your friend know that you would like to help them and are willing to listen when they feel comfortable to talk more.
Don’t feel insecure or upset if your friend talks to other people before you. It can be overwhelming to talk to many people at once and your friend may have their own personal reasons behind who they tell and when.
2. Ask if your friend would like your support
Not all people with disabilities and chronic illness would like help from others and those that would like help may have different needs. It is therefore important to ask if your friend would like support and if they do, ask specifically how they would like your help.
3. Beware of giving unsolicited advice
It may be true that your friend of a friend’s aunt’s cousin cured her UC by drinking aloe juice, but it may be best to keep that information to yourself unless asked. People with chronic illness and disabilities are living with incurable conditions that are lifelong and are likely already receiving care from medical professionals. They have also probably heard stories of various treatments and so called ‘cures’ before and looked into them in their own time.
4. Ask questions!
If your friend is comfortable, ask them questions if there is anything you are unsure of. They may enjoy a conversation that helps to raise awareness and understanding. If your friend isn’t comfortable or you would like to learn more about other disabilities and chronic illnesses then check out charity websites and videos, your friend may be able to point you towards some good ones.
I hope you have found this useful and would love to hear about your tips.