5 Things You Should Know About My Illness If You’re Confused About Why I ‘Look Fine’

A few weeks ago, I invited members from my local lupus support group members over to my house for lunch and an afternoon together. I had doubts about being able to do all the cooking and organizing, so I asked a lady who helps people organize food for events. Let’s call her Mama Lucy.

So, Mama Lucy is at my house early morning, and we generally work together to get the food ready for my guests. In the course of the work, we talk about Lupus and chronic illness. Mama Lucy can’t get over how great I look, how healthy I seem. Her shock doubles when the group members arrive. I told her by then, without identifying anyone or sharing their medical history, that many of my guests have been in an out of hospital for years, some are undergoing dialysis, others are hoping on organ transplants, and most live with chronic pain. She can’t believe how great my guests look, which doesn’t compute with her mental image of a sickly helpless person who needs help getting a spoon to their mouth.

I explained to Mama Lucy that there are in fact days when I can’t lift a spoon to my mouth, and that every case of chronic illness is very different, even when the diagnosis is the same. I told her that some people with chronic illness need day to day help with life activities, while others with chronic illness don’t. Some have adjusted their goals so they can work with schedules that their bodies can handle or even work from home, and some can keep up with 9-5 schedules.

It occurred to me Mama Lucy’s confusion is pretty much everyone’s confusion when they see me: They have to reconcile both my physique and general personality to the fact that I live with chronic illness. So here are five things I’d like to let Mama Lucy and everyone dealing with this confusion know.

1. I will often look fine, or sound fine, sometimes even when I am in pain. Many people with chronic illness often do not have outward signs of illness such as wasting away, or wounds. That is why they are called ‘Invisible Illnesses’ because the effects are on the inside. I am currently struggling with ventricular dysfunction and pulmonary hypertension as a result of autoimmune disease. This is in addition to general inflammation from lupus, gastroesophegal reflux disease (GERD), Raynaud’s syndrome, fibromyalgia and symptoms of Sjögren’s syndrome. I am often in and out of hospital. I, however, am not wasting away, and will often be seen laughing even when I’m hooked up to an IV line.

2. I will often be tired, sometimes too tired to engage in normal conversations and day to day activities. This might seem like a contradiction of point No. 1 but it is not. I will try my best to do what I need to do, but on the inside, my body is fighting hard. This constant battle with inflammation and pain, as well as other symptoms that come and go leave me exhausted. I prefer texts to calls because I can then gather my fatigued mind to get together a response. I will likely never be able to do spontaneous plans. And I will go home early from that dinner.

3. I am interested in you and care deeply about you, even though I am unable to keep up with you. I have canceled on people, some more than once either because a sudden run of severe diarrhea or pulmonary hypertension started up the night before our planned thing. After a while, people give up on me. They stop inviting me to things, or coming around, and some even have stopped answering my texts. I just wish they knew that I still care, and would love to know how they are doing. But its also OK if they are not in a place that can accommodate a person living with my challenges. So its all good, really.

4. Not everyone is comfortable talking about the details of their medical conditions. Because I chose to live my life as a lupus awareness advocate, I often talk about my symptoms to help people understand what lupus and chronic illness looks like. However, some people need their privacy and may not be comfortable sharing with you. If your friend or family member feels that way, please respect their dignity. That doesn’t mean you should back away. Make sure they know you care, and would love to be there for them. It could make all the difference.

I know this one is hard because often people with chronic illness need help in one way or the other. In my case, I once needed a fundraiser to help me get the medical ends meet. During this time I found some people to be quite intrusive based on the fact that I had asked for their help raising funds for medical care. I was able to mitigate the various scenarios without offending anyone, but I can see how it can be a challenge.

5. I am not unhappy, in fact, I consider myself fairly happy despite the challenges of living with chronic illness. I work hard at being grateful for the little things. I keep up with my reading and writing because I believe engaging my creative side helps me to cope with pain. I participate in little projects that help the little part of the world I live in but also fill me with contentment. I consider my illness not as a curse, but as a part of my life that has taught me patience, resilience and kindness and has opened up other spaces for me. So perhaps, next time you see me, rather than be filled with pity, maybe we can talk about my projects.

I often tell people that they see me on my good days, and rarely ever during the bad days when I’m hiding away in my bedroom, or I’m in a hospital room. The thing about chronic illness is that I will have to live with the good days and the bad days for the rest of my life. It might be a long journey, in which case, I’ll have to deal with people and meet new people who will have questions about my life with chronic illness. That’s okay. I’ll keep explaining and hope that, every time I do, the interchange of empathy and information increases in the world.