Living with an invisible illness has the privilege of being able to appear “normal.” However, this doesn’t make the sickness any easier to deal with. In fact, the fact that many invisible illnesses are not respected or well-known presents its own set of difficulties. It’s not a matter of *if* you know someone with an invisible illness, it’s a matter of how many. Whether it be lupus, another autoimmune disease, or anything else under the vast umbrella of invisible illness, there are hundreds of thousands of people who live their lives with invisible illnesses. When you encounter a person with an invisible illness, there are a few things that you can do to make sure they feel seen.
1. Respect Their Limits
The person with the invisible illness is an expert of their body. They know better than anyone what they can and can’t do. So, allow them to speak for themselves and set their own boundaries. For example, if a person is experiencing a lupus flare, their symptoms will be worse than usual, and they will need to make major adjustments in their activity level. A little encouragement is good, but don’t mistake their rationality for defeat. Even though it’s nice to say “you can do it,” listen to them if they say they can’t.
2. Conversely, Don’t Coddle
On the flip side, the person with an invisible illness doesn’t need the world to be changed for them. Once a person is diagnosed with an invisible illness like lupus, they often take immediate action to get their symptoms under control. They have adapted themselves in order to survive, and most likely, they don’t want to be treated as pitiful or childish. Treat them like you would treat anyone else, and they will let you know if they need help.
3. Ask (Appropriate) Questions
Invisible illnesses are not visually recognized and many are not commonly known. If you want to learn more about the person’s illness in order to understand their situation better, just ask them! As long as the question is not intrusive or judgmental, it will show that you are interested and want to accommodate them, which is very comforting.
4. Recognize That Making Plans Is Not Always Feasible
Making plans with an invisible illness is tough when the person doesn’t know how they are going to feel a minute from now, let alone a few weeks in advance. Lupus, like many other invisible illnesses, has symptoms that come in ebbs and flows which are difficult to predict. They can try their best to schedule activities, but they may have to cancel at the last minute. It’s frustrating, but it’s much more frustrating to have to live with the illness itself.
5. Occasionally Check-in
You don’t have to pretend like the person doesn’t have an invisible illness in order to treat them like a “normal” person; if you are doing something that you think maybe a bit difficult, you can do a quick check-in to see how they are doing. Chronic fatigue and joint pain caused by lupus could limit even the simplest of activities. By checking in, you give the person the opportunity to speak up for themselves in an environment that they may not feel comfortable in, and it lets them know that you are thinking about them and their experience.
6. Don’t Take It Personally
Invisible illnesses suck. It’s emotionally, physically, and mentally draining. Dealing with an invisible illness can make it seem impossible to deal with the rest of the world. Amidst a lupus flare, it can feel like your body is actively trying to ruin itself. So if the person with the invisible illness is especially irritable, aloof, or demonstrating any “negative” emotion toward you, it may not be because of you. Take a step back and consider how they are feeling before assuming that they are being malicious.
It’s not easy living with lupus or any invisible illness, but with your tolerance and patience toward those who have them, you can make it a little bit easier.