Today there was a link on the ICA Facebook Page to an excellent article about "What NOT to Say to Someone in Chronic Pain". I started to join the conversation on the FB page but decided this was a good topic for my Blog today and that I would post my take on this ever recurring topic. Here's the link to the article in case you missed it on the ICA FB page.
Like the author I TRY very hard to take things in the spirit in which they are intended. Most people aren't trying to be snarky but think they're being helpful. There are always going to be some people we encounter that in fact may be disbelievers and intentionally make assumptions and comments, but they're not worth our time or energy. I work hard not to let those people get to me; I know they're just ignorant and not interested in understanding and if that's the case, it's not worth my energy to explain it to them.
Now, if someone who I think is interested, but just doesn't fully understand makes a statement that seems insensitive, then I try to explain the reality of the situation. Those people are worth my time and effort and this usually works with people in this category.
Recently, there has been a new situation I have encountered that for me, at least, puts me in what I feel is more of an uncomfortable position as opposed to making me mad or upset. This is the situation when meeting new people who genuinely are interested in my pain & IC, ask me all about it, and are very sympathetic. But then next thing you know they're sending you suggestions on treatments to try; acupuncture, diets, and so forth. I know they mean well, they want to help and I actually like these people. But, I've had this for 12 years, do they really think I haven't explored every option out there to help my pain and symptoms? And what does one say to them without sounding like you aren't interested in trying new or different therapies? Everything I come up with sounds like I'm not interested in trying to help myself or that I'm just blowing them off. It puts me, the sick person, in such an awkward and uncomfortable situation. And I feel that this is not fair.
I think we need to do our part to make sure those in our lives really understand what we are dealing with. We need to ignore people who make these stupid comments, give us dirty looks when we use our Handicapped Parking Permit or even worse, accost us in parking lots like one poor woman posted happened to her! I get the dirty looks too when I use my permit! While it's upsetting, of course, some situations aren't worth engaging in. I know, easier said than done. But it's a goal.
My wish for family, friends and people who are involved in the lives of those of us living with chronic illness, pain and invisible disease would be to just ask us how they can be supportive to us? Ask us what we need from them; how can they help? Instead of offering up unsolicited treatment options, or giving us trite "words of wisdom" on how to handle our illness, ASK questions first! Ask if you don't understand what we're dealing with and allow us to explain it to you. If you don't understand, ask again. Most chronic pain patients are extremely knowledgeable about their condition, the treatment options available and the research going on. We'd love to tell you about it if you want to know. After we've explained our illness, then ask us how to help and what you can do to support us.
So, I feel we should all work at educating those around us, but sincerely wish those who are in the lives of people suffering from chronic pain/invisible disease(s) should ASK before you speak!