Figuring out that a loved one is dealing with a chronic illness can be hard. You may not know what to say or how to deal with it yourself. I have often had people express a level of guilt over not knowing what to say to me when I come clean about my chronic illnesses. I usually end up linking them to an easy how-to guide for what to say to people with chronic illnesses. I decided to make a nice, short simple guide for anybody who wishes to hear my perspective:
The do list
1. Take the time to learn about your loved one's illness. Having an idea, even if a general one, of what they go through on a daily basis is very important. It allows you to have an idea of what their limits are. Chronically ill people usually have to explain and re-explain their illness to others. When there is somebody that takes the initiative to learn about it themselves, it means the world.
2. Simply ask them. Ask them what you could potentially do to aid them going forward. Ask them what their personal "do" lists are. People with mobility-related chronic illnesses may need help maneuvering certain things. People with gastrointestinal chronic illnesses may need a good friend to sit with while they're experiencing GI symptoms. Everybody is different.
The don't list
1. Tell them that they look great despite their illness, tell them, "It's great you're feeling better!" just by looking at them, or anything of the like. Odds are the person will know that it is meant as a compliment. But while it is meant well, many chronic illnesses are invisible. You truly do not have any idea of how that person is feeling, and if you have caught them on a particularly horrific day in regards to symptoms, hearing they look great feels pretty invalidating. Validation is such an important part of coping with an invisible chronic illness. Validation helps us feel less broken.
2. Speaking of validation, do not tell a chronically ill person that all they're missing from their treatment regiment is motivation. As an arthritic person with chronic fatigue, it does not help me get through the day when people scold me for not having the right mindset. Oftentimes, if I say I can't do something, it's because I can't. Saying to myself, "I think I can, I think I can, I think I can" will not help the fact that my immune system attacks my body.
Bottom line:
Every chronically ill person is different. So, it would be a good idea to just feel out the loved one you are thinking of. Sometimes they do want positive reinforcement. They might need someone behind them to take over in case they fail. Someone who is there regardless. So, if they need help, give them help. If they ask for positive reinforcement, give them that. Just please, do not assume! Everybody is different and therefore requires a different support system.
To read more about invisible illness awareness, click here.
