Reading the many other blogs for Invisible Chronic Illness Week at Bloggersunite.com I have to share my own thoughts about a common thread that goes through all of us spoonies….the things people say and our reactions them. In a nutshell…what others think of us and our illness.
“But you look great!” Ok, this one used to hit me the wrong way. Especially when I had been experiencing a bad flare up and my fatigue was so bad it was hard just to shower, get dressed and look presentable to be with people. My knee jerk reaction was to think they did not believe my illness was real. That I was faking it or I was a hypochondriac. Like they were insinuating I did not really have Fibromyalgia. It took me almost a year to get to the point where I decided two key things after my initial diagnosis, even though I had been sick far longer. One, most likely, they were genuinely paying me a compliment. After all, why would I want to look sick? To prove it to them? And then I thought….do I really care what they think? Well, this is a tough one. It would mean a lot if the closest people in our lives and the people we worked with took the time to understand our conditions and accept it rather than ever being judgmental in any way. But the fact of the matter is, I cannot worry about it. Luckily the majority of the people close to me in my life that matter do the best they can to understand where I am coming from. And I have decided if I ever come across anyone that just never does? I do not need that stress in my life. There is little reason to deal with them. If I am forced into a situation where I have to deal with them so be it if they want to think I am lazy or pretending. That is their problem, their business and I am not going to waste my time worrying about it anymore. Once I decided this, things felt better in my head. It even gave me the confidence to write this little blog. Even if someone close to me feels burned out on my having to cancel, or not be available-I just let it be. I figure they probably just feel they wish I could be who I was and I cannot blame them for that. I would probably feel the same if it were the other way around. But torturing myself over it? Just not productive, ya know? So now when people tell me I look good, I take it as a genuine compliment and say “Thank you!”. And I mean it. I might not be feeling that way inside, but that is ok.
“Oh, I get that.” This is fun stuff. Someone asks you what your symptoms are. So you tell them well my hands and feet feel like they have sharp pins in needles in them, there is pain radiating down my arms and searing pain through my legs, my skin sometimes feels like it is tender to the touch like a fever with no temp, my muscles twitch from my legs to my eye lids, my eyes hurt, I am fatigued, parts of my body go numb at random, my neck and back hurt, I have what feels like a constant itchy rash in spots but when I scratch it does nothing because it is just the nerves misfiring…you get the picture. And the person says, “Oh, I get that.” And you think…they have an illness like mine? So you ask if they do. They say “No, but I get an eyelid twitch now and then and my back hurts all the time.” And then they might go on to tell you how busy they have been working, partying with their friends, etc and they do not let it bother them. The famous “I do not let it get me down” and again you feel as if they are one…not really listening. And two, they are insinuating that you are lazy and hypersensitive and you have no tolerance for pain. Again, not worth worrying about. Do I really honestly care what they think about that? Nah.
“I have a (insert blank) who has that and they started exercising and it made it better. You know, exercise really helps that.” Sigh..you try to tell them everyone’s Fibro is different. Not to mention in the back of your head your thinking….whoever it is probably really does not have Fibromyalgia. Probably something else. Because whether it is exercise, diet, meds, treatments, herbal supplements, standing on your head and drinking acai berry juice through a straw during the full moon again…everyone is different. Fibro is a unique kind of pain along with a variety of symptoms and varies by individual case. (And as far as exercise, I will talk about that in an upcoming blog.)
This is not to say I am not open to other people’s pain, I always care deeply about other people's discomfort and believe them fully. Their pain is just as valid as mine no matter what. As a matter of fact, if someone tells me what is going on with him or her and they are having problems, it makes me not only extremely concerned and sympathetic, but able to give them information on what might help them feel more comfortable if they have not already tried it. Of course, I never say “You should” or “Have you”. I just offer them that I deal with something similar and if they wish to pick my brain I am there for them. Otherwise, I just ask if there is something I can do for them. Because we still want to be there for people and our families. On the flip side if people tell me "Oh, you do not have to worry about me. I'll be fine. I can handle it. You have enough on your plate. I do not want you to get worn out." I appreciate that. But I still want to help, so please, at least give me the chance once in a while. It is a part of the old me I wish to keep best I can, and means a great deal to me.
Then there are the "preachers". Different from the ones close to me who speak genuinely from love and want to help-to be sure I have all the information possible to help me feel better, these are usually strangers or acquaintances or someone nosy and chatty you might come across that get wind of your condition and say “You wouldn’t have that if you did (insert blank).” “Are you sure you’re not just depressed?” “Have you tried (insert blank)”. I think I have gotten through the stage where these comments disguised as suggestions bother me. Usually I am pretty polite and try to say something like “I appreciate that. I will keep it in mind.” Or “Thanks for your concern, I appreciate that. I have tried that but it was not for me.” If they press, I just smile and then…try to get away from them! LOL! Outside of this blog and people close to me, I usually try to keep a lid on it about how I am feeling or my condition anyway. It is not like I go places and advertise I have Fibromyalgia. It is my personal business.
Even with this blog I know I am taking a chance putting myself out there in admitting what I have in an effort to spread awareness and help others. If someone who wants to work with me or be my friend cannot see that side and judges me negatively by it (oh, she has Fibromyalgia and makes a big deal out of it on her blog, I do not think I want her designing my new logo, she is not dependable) then why would I want to design it for someone like that anyway? Or have them in my life? The way I feel is at the end of the day, all that matters is what I think when it comes to my illness. What I know. What I believe. It is my body. It is my mind. And despite my brain fog I DO know what is going on. That may not be enough for someone else, but it is enough for me. And that is what is important. And I am still important.