I have always found the hardest part about living with a chronic illness is conveying it to others. There are so many layers to it, and they cannot always be seen by the naked eye. Many of the effects are emotional, internal, and invisible. This blog post is a list of my top five things that I want others to know about chronic illness.
1. How we look on the outside is not a reflection of how we feel on the inside.
I admit to the fact that I hide my illness. I do it because it’s easier that way. If I hide how I’m really feeling I can avoid any misdirected questions about my weight, how tired I look, or what I’m wearing. Chronic illness is invisible and it’s really important to raise awareness about this. Never judge someone by how they look on the outside because you never know what battles they are fighting on the inside. A lot of people tell me I always have a smile on my face and while that is true, it isn’t always a genuine smile.
2. Just because we are in remission, doesn’t mean we are all better.
Reaching remission is the ultimate goal for someone with chronic illness, especially IBD. Remission doesn’t always mean that we are all better though. We may be symptom-free, which has a huge positive effect on our well-being, but we also suffer from emotional and psychological damage. Trauma is very apparent in those living with chronic illness. I myself have experienced things that I would never wish on someone else and I have found that even though I feel better, my past still weighs me down and prevents me from moving forward.
3. We like when others try to understand our disease.
I personally appreciate when people ask me what it’s like to have IBD. If someone comes up to me and wants to learn more about it, I will be happy to answer questions. I promise I will not be offended. I have always considered myself an open book and even though talking about chronic illness is hard, it is necessary to bring awareness which is my main goal. We just want to surround ourselves with people who try to understand and respect what it’s like to live with a chronic illness, so that we feel less alone.
4. The all-natural medicine treatment you suggest doesn’t work for everyone.
Chronic illnesses are extremely complicated, which is why none of them have a cure. If there was a cure for IBD, I’m pretty sure all of us patients would be pursuing that. Since that is not the case, you need to understand that each case of IBD is unique. Different medicines and treatments work for different people. For me, I have found success in taking Humira, but my friend who has Crohn’s found healing through Stelara. Biologic treatments vary based on the severity of the disease. There have been many times where acupuncture, herbs, and essential oils were suggested to me as a way to cure my disease, and unfortunately that is just not true. Maybe these things could help in combination with daily exercise, sleep, and medicine, but not solely on their own. If you’re not a doctor, you have no right in suggesting what medicine I should be taking.
5. Respect our boundaries.
When we say no to those plans to go out on a Saturday night, we want you to respect that. It takes a lot of courage to say no, but it also means we are choosing to listen to our bodies first. One benefit that I have found since being diagnosed with IBD is that I understand my body so much better. I know exactly what my body needs and when I need to take a break. We just don’t want to feel guilty for saying no.
I’m sure I could come up with many more, but these seem to be the most important to me as an IBD patient. What I want you to take away is that chronic illnesses are extremely complex. They are not always seen from the outside and we want more than anything for people to understand and respect our decisions and boundaries. We need to bring more awareness around this and I hope this blog post did just that.
To my fellow chronic illness patients, can you think of any others?