Thursday, July 8, 2010

You must not be sick - You look so good.

I often get the feeling from people or friends that I am making more of this “Autoimmune thing” than warranted. I have heard things ranging from, “Oh someone my friend knows has that and she just takes a pill” (mind you that “pill” is probably chemo or a steroid, but a “pill” nonetheless – to – “well don’t worry then, you could live another 20 years” (ummm if I told you that your life would end at 60 and you should be happy about it, would you be?) -to – the ever famous “but you look really good”.

People are funny. I understand there is no “Right” thing to say to someone who becomes sick. I get it. But sometimes just being there and having the empathy to try to understand what it may feel like to the person is enough. There is so much judgment sometimes………. “you must not be sick if you can work out, clean your house, make it through an aerobics class, put on make up, do your hair, or be silly with your kids”.

So, because I am sick now – I do not have the luxury of looking good? Of living as much as I can. I should walk around catatonic looking like Roseanne with Something about Mary hair? I want to look good. It feels good to look good. I like feeling pretty, especially when you don’t feel good on the inside. Yet not every day IS a good day.

There are the days when I can’t get out of bed. I am so tired I sleep through my alarm and then my back up alarm. Or days when I drag myself out of bed only to sit there and stare like something out of a Goerge A Romero film because I don’t have the energy yet to do more than that. There are the days when I do make it out of bed, but holding a hair dryer would require more energy and resources than fixing the BP mess, so I throw my hair up in the house wife pony bun on top my head and get er done. Those are the days where I wish I could apply my make up but can’t because my arms are so shaky the end result would look like a crime scene or at best the hooker from My Name is Earl. I feel ugly on the inside and the outside is no picnic either.

Those days when I am “Feeling” my illness are scary. It is a reminder that some foreign enemy has stolen my life from me. I look in the mirror and I am not the same person. The reality that the “type A all the way” me is gone for good and has been replaced by a Golden Girl. I used to do it all, and still stay up to watch The Late Show. I was a doer, I was an achiever, I was living a life full of energy able to do what ever I wanted because I felt great and had the energy to do it. Now I am lucky if I stay up till 9:00. I didn’t even have the energy to finish the season of “Lost” 

I am not that same person. I don’t think people or friends understand. I can’t do it all anymore. There are days when I cry because I can’t even clean my house. Something I am sure most people wish they didn’t have to do – sometimes I can’t and wish I was still one of those people wishing I didn’t have to. I don’t think people realize that yes, I may work out, but the reality is I will pay for it if I do too much. I may not be able to lift my coffee cup the next morning, something so simple that most people take for granted. If I over do it – I may literally be in bed the next day or at the very least, I will not be using my arms or legs – which by the way, really puts a damper on doing much! So – Yes I may not look sick and I may be working out beside you, but that doesn’t mean my life has not changed.

I thank God for those days or weeks where I feel well enough or have the energy to pull off normal. I make the most of it and cram in as much as possible because sadly I know right around the corner lies the unknown. With an autoimmune disease you DON’T know what each day will hold. Each day is a new adventure and trip down the rabbit hole to new symptoms, energy level and abilities. What I can do one day, I may not be able to the next. It makes planning a tad precarious. But that is the reality. I may wake up and blog and when I am done be so stiff and my hands decide to quit on me and that’s it. Game over – Check Please – Don't forget t tip your waitress - Thank you and good night.

Looking good takes work – so I guess I should take it as a compliment when people say..”Oh, but you look so good” or “But you don’t look sick” – because flat ironing the Rosanna Dana hair and putting on make up some days is right on par with disarming a nuclear weapon. But I can’t help feel that behind the comment is the human need to justify – “well if she looks fine, she must not really be that sick”, “If she can exercise she must not be sick” or “Hell, I have four kid and work full time, ‘Im tired too”

I would never belittle someone else’s pain or fatigue. I haven’t walked in your shoes. I don’t know. I think how we handle life is an accumulation of our life experiences. What one person can handle, may spin another person into a nervous breakdown. I think our past and past experiences prepare us on how to handle life. You know that expression – Life is 10% what happens to you and 90% how you react to it. So when people who are not dealing with an illness express their fatigue or stress, I get it. Hell, I’ve been there too. I was a teenage mom, a single parent, I worked full time and put myself through school – get it. You get tired sometimes. I just think what I felt then was a different tired than what I feel now and I wish that people would try to understand that.

I have had a bad few days, I am having some malabsorption issues and I think it is causing me to feel weak or perhaps it’s a flare up from being in the sun too much over the Fourth of July. I went to Sam’s Club yesterday and I couldn’t stay. My muscles weren’t cooperating. I felt too weak to walk around a silly big box store for 30 minutes. I mean such a silly little insignificant outing was halted because my body decided to betray me. Something I am sure many people take for granted, I know I did. All I wanted was a pretzel and some cheap socks!!

The things I do, I do when I can. I do not take anything for granted. I exercise to function. To keep my joints moving and to not lose mobility. I need to keep my heart healthy and my lung capacity strong. I need to keep myself strong. To keep as much muscle as possible since I will continue to lose ATP and muscle function. I want to be a size 4 and have a Kardasian body – but I am no longer working out for that any more. I am working out now to live. To be healthy and to function. The irony is at times working out causes a longer recovery time because of my illness. Taking an hour class may take the rest of the night to recover from. It is a catch 22.

I used to work with a trainer every day. I had signed up with him before I was formally diagnosed, but was still having vague subtle symptoms. I would have days where my muscles felt weak or I felt like I was unable to lift my leg in an exercise I could do the week before. Because I am me, I of course blamed my self and thought I was just lazy. I would get upset with myself. I remember telling my friend about it at the time and not thinking anything of it. Of course it was just laziness or weight gain. But as the training went on, I knew something was up. My muscles were not cooperating, and then visa vie – I received the diagnosis.

I kept on. I wanted to train. I wanted to look great and be healthy. It was fun. But it was also taking a toll on me. I can no longer get up so early. I can no longer push myself too much. During my training, my trainer would push me harder – and I did not want to fail, let him down or my work out partner down, so I would try. Then I would get home and my arms would just fail. I tried explaining it to my trainer and partner, but I don’t think they got it. I understand, it’s the trainer’s job to push. But I could not be pushed anymore. Some days I couldn’t even lift the same weight I had the day before. I think because I looked fine and had always done it – the expectation was to keep on doing it. But I just could not.

I had to cancel the training and trying to explain an illness to an institution built on strength was like explaining why keeping the blue dress was a bad idea. I mean – they just weren’t getting it. It was a humiliating and degrading experience, not helped by the end of my friendship with my work out partner. It sucked. It sucks to feel weak. It sucks to feel like a failure. It sucks to see people go on without you while you are left behind unable to keep up, it sucks to lose the ability to do what you have done. It sucks…. But I think with an auto immune illness you are sometimes alone in the suckiness because you don’t look sick. There is not much empathy or understanding.

So, I guess I look fine which I am grateful for. For now anyway. Anyone who has taken the time to research the Big S knows that in time, there may be cosmetic changes to come. Which is frightening. From a vain “I like my face” point of view to the loss of movement and eating ability it may bring. It is scary to think and to know, that my face as I know it may change. That I may lose my upper lip and not be able to close my mouth. That is a reality that my future may bring. 

I get my nails done, I get my hair done, I work out as much as I can. I want to look good because there will be days when things will get ugly. When I am throwing up every internal organ I have after my weekly methotrexate injection. When the bottom of my shower looks like all three ZZ Top members shaved their heads and beards because of the hair I am losing from chemo. The days when I wonder how soon before I will be doing the “The Donald” comb over. So for now – I don’t look sick, I do look fine and I do look good. And damn it – I will take it!

I am learning to not let the “But you used to” get to me any more. I am learning to be proud of myself when I am able to make the engagements I planned and to forgive myself and not fee guilty about the ones I may have to cancel. I am learning that people who love me and care about me understand, and those who don’t get it never will.

I don’t look sick. I know it….I hear it. If I stopped doing all the things that I have just talked about…would I be more deserving of your sympathy? But the point is – I don’t want sympathy. I want friendship and understanding and on the days I feel ill, once in a while some empathy. We all want that right. Validation, that what we all do on a day to day basis is hard work.

I gotta know when to hold em and know when to fold em. So yes, some days I will be in it to win it and out there knockin em dead trying to do as much as I can, because tomorrow may be the day that I lost the battle and have to fold em.


  1. Wow...Thank you !!! Thank you for putting my feelings into words. You said it perfectly.

  2. Thank-you...I'm in bed by 8pm..there are little kids that stay up later then that!