Karandeep Kaur

@karandeepk | contributor
Chronic illness blogger trying to bring more awareness and understanding about those of us living with long-term illnesses. Using art to convey the emotions and experiences of living with a chronic illness.
Karandeep Kaur

The Trauma of Being Diagnosed With a Chronic Illness

When we talk about trauma , we may tend to think of it as being caused by a single terrible event, such as an accident or an incident in which we felt we were in danger. However, this way of thinking may make it easy for us to forget about the other things in our lives that cause us distress and can leave us dealing with the emotional aftermath of our trauma for years to come. These other events include losing a loved one, losing a home or belongings, and of course, becoming ill with a chronic illness. While all these events are incredibly different, they all include one thing in common: the loss of something you can’t necessarily get back. When you lose someone close to you, you may cling to the memories you made with them as you know you will not be able to make any more. Similarly, when you’ve lost your home and precious possessions to a flood or natural disaster, you might try to remember the happy moments you had there as you may not be able to return. As for living with a chronic illness , you may spend a lot of time thinking about all the activities you were able to do before you became ill that you know you may never be able to do again. When I first became ill with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) , my entire life changed. I quickly went from being an active 12-year-old to a child who had to stay in bed for most of the day. I lost the carefree fun I had known up until then and had to start thinking about how I was going to manage my life with this illness. It was a huge shock to realize I couldn’t do the things I could easily do before. I felt as if I was suddenly a different person and there was nothing I could do about it. This is an experience many people with chronic illness go through, and yet they are regularly left to deal with it on their own without help from health care providers. It has taken me a long time to become comfortable with the reality of my illness. I’m not going to claim I am completely fine with it because that isn’t true. I still have days when I feel upset or confused about it, and I’m not sure if those feelings will ever go away. However, after spending time coming to terms with my condition and engaging with the hobbies that are still accessible to me, I’ve managed to get a piece of myself back that I thought I’d lost. I’ve also found strength in the knowledge that despite how difficult living with chronic illness has been, I’ve managed to learn to live with my condition while still doing things that make me happy. This is something I am very passionate about, as I believe those of us who are chronically ill deserve the right to a life we can enjoy. I like to share some of the tips I’ve learned to manage my illness on my website and also highlighting different parts of my condition to help those who don’t have it understand and those with CFS/ME feel less alone. I’ve found loneliness and isolation are often key challenges of the trauma of illness, as you often believe you are dealing with your illness on your own. I think it is time we stop leaving people with chronic illness to deal with their trauma in silence. We need to recognize illness as a potentially traumatizing event and give those who have experienced or are still experiencing chronic illness the help they deserve.

Karandeep Kaur

4 Steps to Having Open Conversations About Your Chronic Illness

Living with a chronic illness means adapting all areas of your life to fit around it. It might mean changing the way you work or how much time you spend with loved ones. This can cause conflict with the people in our lives, as they don’t fully comprehend the impact of our illness. To help with this, we might decide to have an open conversation with our family and friends, to help them understand why we are putting certain things in place or what our lives may look like in the future now that we have a chronic illness to manage. If you’ve been in this position before, you will know the issues that can arise when having these conversations, particularly with the closest people in our lives. These conversations may become heated and emotional as many delicate points can be brought up and discussed in a new way. Over the years, I have had many of these conversations and most of them did not go smoothly. After having a lot of these strained discussions, I decided I needed a plan to help me get through them and ensure the conversation was beneficial for both myself and the people I was speaking with. And so, I created my step-by-step guide to having an honest conversation with family and friends about my chronic illness. Step 1: Decide exactly what aspect of your chronic illness you want to talk about. A lot of the times I started a conversation about my illness with my family and friends, I would find myself easily getting distracted and drifting into other subjects. It would only be after the conversation was over that I would realize I didn’t talk about the one thing I needed to. Now when I know I need to have a conversation with someone about something in particular, I bring it up at the beginning, telling them I want to talk to them about this specific thing. This helps us both to stay on topic and allows me to speak about the things I want to. Step 2: Plan an appropriate time and place to have the conversation. Looking back on some of the discussions I have had that quickly turned into arguments, I can identify times when I brought up a subject in the wrong place. I’ve found that conversations I know are going to be very emotional or difficult should be had in a private place where all people involved feel comfortable. You can’t expect someone to react to something calmly if they are already in an environment they feel uneasy in. For conversations I want to feel lighter and less intense, I find going for a walk together can make it easier to talk about things. This is because you’re not facing each other and you’re partially focused on another activity. Some of the deepest conversations I’ve ever had have occurred on a walk or in the car. Step 3: Acknowledge that some things may be difficult for the other person to hear. When we live with a chronic illness, we can spend so much time focusing on how we are affected by it, we can forget our loved ones have been affected by it too. When I first started my blog and showed the posts to my family, I was surprised by their reactions. I remember my parents telling me that they found it difficult to read about the ways this illness has changed my life and the range of symptoms I have to deal with on a regular basis. To me, this information wasn’t emotional at all because it was something I was used to but to them, it was a stark reminder of the difficulties their daughter has to face. I try to remind myself people react in different ways to the same scenario depending on the context behind it. This helps me be more accepting of reactions towards what I am saying and being open to their point of view. Step 4: Know when to let it go. Sometimes you can try all you can to make someone comprehend what you’re going through and they just don’t get it. This might be because it is too hard for them to understand or they don’t want to understand. In either case, it’s important to know when to let the subject go and to accept that their opinion might not match your own. This step has saved me a lot of energy and for someone living with CFS/ME, that is very important to me. By using these simple guides, I have been able to have much more productive and honest conversations with the people in my life and consequently, have greatly improved my relationships with them. After 10 years living with chronic illness, I know the relationships we have are incredibly important, and meaningful conversations are the best way to nourish them.

Karandeep Kaur

Boredom: The Neglected Side Effect of Chronic Illness

When I was seeking treatment for my illness, chronic fatigue syndrome, the first thing I learned was the importance of rest periods. Right from the beginning, it was drilled into me that I must make sure I include enough periods of rest so I don’t burn out and feel even more exhausted than I already do. I was told to plan out my day and grade every activity on the amount of energy it would require of me. I’d label these activities low, medium, and high level, and I’d make sure to separate them with the appropriate amount of rest periods. A few low-level activities in a row were fine, but mixing high and medium levels together required a lot of rest in between. And so, I would plan out my day filled with both activity and rest, and I would stick to the timetable I’d created for myself. However, as I rested between each draining activity, I realized the one thing those treating me had neglected to talk about – resting is boring. It is infuriatingly boring. I would find myself so frustrated when I knew it was time for me to rest that sometimes I would decide not to do it at all. Of course, then I would feel ill from doing too much and would spend the next few days recovering. It was clear that I needed to rest, I just needed to find a way of doing so that wouldn’t annoy me so much. This is when I started experimenting with rest activities. I’d look for things I could do that would only take up a small amount of energy, so I was still getting the benefits of resting without getting frustrated. It took a while for me to work out what was a rest activity and what was a low-level activity. For example, for many people reading a book would be a restful and relaxing activity. For me, it is more of a medium to high-level activity as it takes a lot of concentration which drains my energy. After a while, I realized activities such as doodling, coloring, and listening to relaxing music were engaging enough to keep me happy but not too mentally straining that they would exhaust me. I now use these activities as resting techniques regularly and have found it much easier to rest. Despite what I have said so far, I know there is value in completely resting and I know my body benefits from it. Therefore, I’ve decided to change my perspective on boredom. Although I know it can be frustrating to experience, I now understand a bored mind is a perfect place for creative thoughts to appear. Since embracing boredom as a regular but necessary part of my day, I have been able to think about ideas that had never occurred to me before. Both my writing and art have improved as I’m able to see things from different angles and perspectives. Boredom gave me the space to create my own website and use it to talk about chronic fatigue syndrome in a new way, as well as share the different ways I have learned to manage it. It gave me the idea to use my art as a way to communicate with others about the daily realities of chronic fatigue syndrome, whether they have the condition themselves or they wish to learn more about it. Embracing the boredom that living with chronic fatigue syndrome can bring has brought some unexpected joys into my life. I still get annoyed at times, but I remind myself of the benefits boredom can bring to both my body and mind. It’s time we started talking about boredom in the chronic illness community and seeing it for what it is — frustrating and wonderful.

Karandeep Kaur

Boredom: The Neglected Side Effect of Chronic Illness

When I was seeking treatment for my illness, chronic fatigue syndrome, the first thing I learned was the importance of rest periods. Right from the beginning, it was drilled into me that I must make sure I include enough periods of rest so I don’t burn out and feel even more exhausted than I already do. I was told to plan out my day and grade every activity on the amount of energy it would require of me. I’d label these activities low, medium, and high level, and I’d make sure to separate them with the appropriate amount of rest periods. A few low-level activities in a row were fine, but mixing high and medium levels together required a lot of rest in between. And so, I would plan out my day filled with both activity and rest, and I would stick to the timetable I’d created for myself. However, as I rested between each draining activity, I realized the one thing those treating me had neglected to talk about – resting is boring. It is infuriatingly boring. I would find myself so frustrated when I knew it was time for me to rest that sometimes I would decide not to do it at all. Of course, then I would feel ill from doing too much and would spend the next few days recovering. It was clear that I needed to rest, I just needed to find a way of doing so that wouldn’t annoy me so much. This is when I started experimenting with rest activities. I’d look for things I could do that would only take up a small amount of energy, so I was still getting the benefits of resting without getting frustrated. It took a while for me to work out what was a rest activity and what was a low-level activity. For example, for many people reading a book would be a restful and relaxing activity. For me, it is more of a medium to high-level activity as it takes a lot of concentration which drains my energy. After a while, I realized activities such as doodling, coloring, and listening to relaxing music were engaging enough to keep me happy but not too mentally straining that they would exhaust me. I now use these activities as resting techniques regularly and have found it much easier to rest. Despite what I have said so far, I know there is value in completely resting and I know my body benefits from it. Therefore, I’ve decided to change my perspective on boredom. Although I know it can be frustrating to experience, I now understand a bored mind is a perfect place for creative thoughts to appear. Since embracing boredom as a regular but necessary part of my day, I have been able to think about ideas that had never occurred to me before. Both my writing and art have improved as I’m able to see things from different angles and perspectives. Boredom gave me the space to create my own website and use it to talk about chronic fatigue syndrome in a new way, as well as share the different ways I have learned to manage it. It gave me the idea to use my art as a way to communicate with others about the daily realities of chronic fatigue syndrome, whether they have the condition themselves or they wish to learn more about it. Embracing the boredom that living with chronic fatigue syndrome can bring has brought some unexpected joys into my life. I still get annoyed at times, but I remind myself of the benefits boredom can bring to both my body and mind. It’s time we started talking about boredom in the chronic illness community and seeing it for what it is — frustrating and wonderful.

Karandeep Kaur

Boredom: The Neglected Side Effect of Chronic Illness

When I was seeking treatment for my illness, chronic fatigue syndrome, the first thing I learned was the importance of rest periods. Right from the beginning, it was drilled into me that I must make sure I include enough periods of rest so I don’t burn out and feel even more exhausted than I already do. I was told to plan out my day and grade every activity on the amount of energy it would require of me. I’d label these activities low, medium, and high level, and I’d make sure to separate them with the appropriate amount of rest periods. A few low-level activities in a row were fine, but mixing high and medium levels together required a lot of rest in between. And so, I would plan out my day filled with both activity and rest, and I would stick to the timetable I’d created for myself. However, as I rested between each draining activity, I realized the one thing those treating me had neglected to talk about – resting is boring. It is infuriatingly boring. I would find myself so frustrated when I knew it was time for me to rest that sometimes I would decide not to do it at all. Of course, then I would feel ill from doing too much and would spend the next few days recovering. It was clear that I needed to rest, I just needed to find a way of doing so that wouldn’t annoy me so much. This is when I started experimenting with rest activities. I’d look for things I could do that would only take up a small amount of energy, so I was still getting the benefits of resting without getting frustrated. It took a while for me to work out what was a rest activity and what was a low-level activity. For example, for many people reading a book would be a restful and relaxing activity. For me, it is more of a medium to high-level activity as it takes a lot of concentration which drains my energy. After a while, I realized activities such as doodling, coloring, and listening to relaxing music were engaging enough to keep me happy but not too mentally straining that they would exhaust me. I now use these activities as resting techniques regularly and have found it much easier to rest. Despite what I have said so far, I know there is value in completely resting and I know my body benefits from it. Therefore, I’ve decided to change my perspective on boredom. Although I know it can be frustrating to experience, I now understand a bored mind is a perfect place for creative thoughts to appear. Since embracing boredom as a regular but necessary part of my day, I have been able to think about ideas that had never occurred to me before. Both my writing and art have improved as I’m able to see things from different angles and perspectives. Boredom gave me the space to create my own website and use it to talk about chronic fatigue syndrome in a new way, as well as share the different ways I have learned to manage it. It gave me the idea to use my art as a way to communicate with others about the daily realities of chronic fatigue syndrome, whether they have the condition themselves or they wish to learn more about it. Embracing the boredom that living with chronic fatigue syndrome can bring has brought some unexpected joys into my life. I still get annoyed at times, but I remind myself of the benefits boredom can bring to both my body and mind. It’s time we started talking about boredom in the chronic illness community and seeing it for what it is — frustrating and wonderful.