Communicating the Challenges of Explaining an Invisible Illness

I have long been telling people about my living with PsA. I have had PsA for over ten years now. There is not a day that I do not hurt. My PsA affects my back, my hips, and my knees. It has gotten worse over time.

My knees are definitely worse, but that was to be expected, especially after the serious injury to my left knee. Our weather here in Louisiana has been rainy, with some heavy storms. That also affects my PsA in profound ways.

While PsA is not something you can see outwardly, it is something that is hard to explain. I still have times when I find it difficult to explain. For instance, my husband and I just started attending a new church. I must explain, but trying to do so takes work.

Finding community and understanding

We decided to check out this church, which is five minutes away from our house. It has been the right decision. The people are so caring. It is a small congregation with maybe 20 people tops attending.

I just found out this past weekend that one lady has a friend who has psoriasis. It has made it easier to talk to her about it. However, everyone else seems to not know anything about psoriasis, especially PsA.

I am very upfront about my psoriatic conditions. With years’ worth of PsA and this weather, there is not much way to avoid it showing somewhat.

Explaining my PsA to men and women

So, what do I mean by it showing somewhat? My trying to stand in one spot for any amount of time is challenging. The longer I stand, the more the knees hurt. Sitting too long and then trying to get up is also incredibly challenging.

What do I say when they ask if I am okay? I explain my PsA this way to women. I compare it to spring cleaning a house.

Spring cleaning entails washing and rehanging curtains and cleaning floors, especially carpets, which means mopping, vacuuming, and using a carpet cleaner. Every room requires something to be done so your house is fresh and clean. That requires energy, which is something we, as psoriatics, run low on all the time.

Then, I start breaking it down when it comes to lifting, bending, exerting, and using the spoon theory. Most of the time, women can relate to and understand this completely.

Men, however, are a different story. Most do not understand what is required to clean a house so I can't use the cleaning comparison.

I break it down in terms men can relate to usually by asking what kind of work they do or their favorite hobby. If it is a job that requires all the things like lifting, bending, long hours and little break time that sort of thing then I can use that to explain the PsA.

If not, most men’s hobbies include hunting, fishing, or sitting for long periods watching sports. You must find something that they do that you can relate to and use your experience with it to explain PsA.

For example, I love to fish. I know what is required when you go fishing. Trying to get in the boat, standing for long periods of time or sitting for long periods of time, all of which can be used to explain PsA.

Other communication suggestions

The next time you have to try to explain PsA to someone who cannot see what you deal with on the inside, try using one of these techniques. I will not promise it will work with everyone, but I have had great success with it over the years.

People find it easier to relate to something when it is something they know. If you have found other ways of explaining it, we would love to hear from you.