Now you see it, now you don’t

It’s been a while since my last post. I have another inflammation in my lungs landing me the in the hospital (again), this time for a week. Doctors are still working on stabilizing my lungs. I do enjoy challenging people but I really believed they would have found a treatment by now. But the specialists are still working on it, so kudos to them for not giving up on me. And I hope they do find one and soon. I am not too exited over the idea of a double lung transplant. But, like anyone with a chronic illness, patience is key. Hope is scary. And the unknown causes anxiety. We each deal with this in our own way and writing is a good outlet for me.

So, the reason for this post.. Out of hospital I was prescribed oxygen (O2) at home for exertion. One part of this is a machine that is plugged into our electiricty with a 50 ft tube so I can literally go anywhere in my house. So if I am climbing our stairs, cooking, walking on the treadmill, etc. I can use the oxygen that helps to both save energy and reduce my shortness of breath.  I also now have access to portable O2 tank, which comes in a heavy ass shoulder bag, for when I go out. We are hitting my worst season, summer. Anyone with a respiratory condition I am sure can relate, so without a doubt the portable tank will get a lot of use.

I can go for walks outside when the weather agrees, go to the mall, out for dinner, visits with friends. It has made a huge impact on my ability to go places and see people,  that without the oxygen, I could not. I still get bad days however, which can be discouraging, because once you have a small taste of what able bodied people can enjoy everyday without thinking twice about it, it really is addictive. My therapist is thrilled at how much I have done to date. I was stuck in my bed or at the very least, in my house for a majority of the time. I am sure I don’t have to explain the emotional toll that takes on a person. It’s hard.

With this new found freedom, my illness has changed from being “invisible” to “visible”. It almost reminds me of those programs that do social experiments on unsuspecting people to see how they would react to seeing someone bullied, drop a $100 bill, slack off at a coffee shop or what have you. For me, before the O2 tube, no stranger would know how truly sick I am. I am on predisone, so that has a certain look to it. But you wouldn’t automatically guess that I am taking that medication to help control my lung inflammation. So my chronic illness was truly invisible.

Before the tube, people would be very impatient at how slow I walked. Many times I would get loud sighs, as in, can you move a little quicker here, I haven’t got all day. People would bud in front me, seeing me heading to a register and quicken their pace to get ahead of me. Something my lungs don’t allow me to do is walk quickly. I have gotten many surprised looks about being on disability. A look that seems to me is “nice, someone else taking advantage of the system”. Some of this may be me being sensitive to peoples perceptions but I really don’t think I am too off the mark.

Now that I am wearing the O2 tube, while outside the house, there has been a noticeable shift at how people look and talk to me. I was very self-conscious at the beginning, feeling as though everyone was looking at me. I would study their face as they passed me just to see if they did look and if they stared. And man, do they ever ! Doesn’t matter if it is a man, woman, their age, their own condition. I had a 10 year old boy stop on his bike and ask me “what is that thing on your face?” If he was closer to me I probably would have kicked him off his bike! I would be humiliated if either of my kids talked like that to a stranger, much less in such a rude way. And while out shopping in a clothing store, which takes a lot of breathing power actually, I came out of a waiting room with the tube on and a an older woman, sitting on a walker no less, said to me “poor you”. I again was shocked that first of all she wouldn’t get that people of all ages are affected by illness and secondly to comment there is something to pity. Again I was insulted. In my mind I thought if you knew how this appartus has changed my life you would be saying “lucky me”.

I have had this invisible vs visible illness discussion with a number of people who are close to me, for their thoughts on people’s intentions when they stare or make comments. My husband thinks no one notices. Which I always find amusing. He is constantly trying to minimize my self-critism, which I was very hard on myself adjusting to the tube in public. My daughter, studying to become a nurse, gives an evil eye back to those who stare and has the opinion, why would people not ‘get’ that a person would feel self conscious already wearing a tube & that staring at them makes them feel uncomfortable ? My son’s opinion is, if it makes you feel better, who cares what other people do or think ? Finally, my friends believe people are not trying to be hurtful, they are just curious about someone so young needing oxygen. And saying something like “poor you” is just a person trying to be nice.

After many years of being sick, I have come across a lot more people who judge and criticise then those who are kind and supportive. I keep very close to me the latter, and lucky for me I have quite a few in my life. I am not sure  between the two, having my illness hidden or out there for all to see, which is better. I know what makes me feel physically better is having my O2 tank.

To be honest, I have stopped looking into people’s faces for reaction, approval, ignorance because at the end of the day, I am getting out there. I am feeling productive. And that makes me happy. To be able to go shopping with my kids, pick up a few groceries,dinner with my husband, get my hair done …. this is all good stuff. Given the choice, I obviously want to enjoy some “normal” quality of life, regardles of what anyone thinks about how I look. And quite frankly, if it makes them uncomfortable that’s their issue not mine.

PIC 1 :
PIC 2 :



And now for something completely different



I was on twitter a few weeks ago and came across something that caught my eye. There was a post which headline read “20 Things I’ve Learned From Being Sick”. I thought to myself, how many of them do I have in common with this person ?  So I went to the blog and what I read hit me in a way I have trouble explaining. The article was very funny first off, but underneath the humour was so relatable and for me at least, seemed to switch something on the inside of me about my experience of being sick. In such a GOOD way.

I experienced some of the 20 but not all, however, the whole article is intelligent, funny and worth reading over and over. The author has lupus which I’ve heard from my own rheumatologist is a very painful & complicated disease.

It made me realize I was struggling so hard to impress others about being strong, inspirational, someone to look up to …. But just because I am sick doesn’t mean I have to be any of these things. I have had family members and friends tell me that I am. So … I doing a good job of being sick ? I don’t feel that way. Especially tough, are the critics who say I am not trying hard enough. I literally could kick them in the throat. Because sweetheart, you wouldn’t last a day in my slippers !

I have thought that to myself so many times and this author articulated sickness in a way I never could. Nonetheless, I am truly grateful for reading it. I feel entitled to feel how I feel no matter what people think or don’t think. My friends, it took me a long time to be able to laugh at being sick, but it felt SO DAMN GOOD.

The author has graciously agreed to let me quote her article & I would like to share with you a few points of this article that really hit home for me. If you want to read the entire article the source is at the bottom of this post, and I encourage you to read it, as well as the other posts. Sick or not.

“20 Things I’ve Learned from Being Sick

A few times a month I get e-mails from these awful websites that focus on inspirational nonsense and the editors tell me that they came across my blog and thought I would be a good fit for their site …  I just can’t submit something to websites that are 90% made up of articles with titles like “watch this inspiring paraplegic man play the drums! How inspiring! If he can drum then you can do anything!” No. If he can drum that doesn’t mean I can climb Mount Everest. There is zero correlation between those two things. I also have no interest in climbing Mount Everest so what is your article even proving, stupid website?!

So the folks asked for a “list-type” article detailing the inspiring things I have learned since being diagnosed with lupus.” And the request made me so irate that I actually sat down and came up with a list of actual real life things I have learned from being sick. So here is the list I created.

  • Stairs are the worst.
  • Beds are the best.

My bed is my best friend.

  • Netflix is also the best.

Okay, I have two best friends. Bed and Netflix. How did anyone get through having a chronic illness before Netflix was invented? I guess you just taped every episode of Days of Our Lives and re-watched it on your sick days.

  • My boyfriend (husband) is really patient.
  • I’ve learned who my true friends are.

Having a chronic illness is a great way to find out who your true friends are. I guess an even better way to find out who your true friends are would be to text and ask them. Definitely way less dramatic than getting lupus.

  • “But you don’t look sick” is the worst thing you can say to someone with an invisible illness.

It makes me want to hulk out every time I hear it. My friend Clare, who is really good at friendship, once said to me “You don’t look sick, but I bet that makes it even harder for you sometimes.” Yes! Be like Clare. Say things like that instead of ending the sentence on “but you don’t look sick.” If you say “but you don’t look sick” to me, this is how I hear it: “As a healthy person I feel the need to comment on your struggles even though it’s really none of my business and I must say that you do not look sick, which is my way of not validating your illness…….(cont’d)  If you’re telling me I don’t look sick because maybe my lipstick looks really fierce and I styled my hair a really cool way today just tell me my lipstick looks fierce and that I’m rocking my hairstyle! How I look has no relation to how I feel.

  • You have to joke around about your illness sometimes.

(Cont’d)  It’s important for me to have friends in my life who are also not serious people and who can joke around about it too. It makes coping with an illness way easier and it also makes it much easier to openly talk about your illness with those around you.

(And my favorite of all ….)

  • Everyone expects me to suddenly be inspirational and that’s total BULLSHIT.

I’m sorry, being sick or disabled just doesn’t make me or anyone else an inspiration. And if you keep thinking that, you are upholding and propelling very dangerous ableist beliefs that end up objectifying sick and disabled people and making them some sort of “other.” So quit it.

I am not an inspiration. I spend 90% of my time squandering my potential while binge watching Netflix originals. If someday I actually do make a difference in the world by winning the lottery and funding this breakthrough lupus treatment then give me a shout. But for now just let me watch Daredevil in peace.”

I think I love her !!! And she now has a follower for life. Thank you Lisa, you have no idea how you’ve empowered me.

I know this post is a long one, but I felt I had to do the article justice because everytime I read it it makes me laugh. And, it expresses so perfectly how I have felt so many times and just wasn’t bold enough to speak up. I hope this made you smile or laugh. I am off to get some fake eyelashes on … why, because I damn well feel like it !

Author of “20 Things I’ve Learned From Being Sick”
Title” Monty Python, circa 1971″

The other ‘stuff’

My experience has found people offer help but more often than not, find the idea of helping someone with depression or anxiety makes them very uncomfortable.  But when I tell them I have lung disease, also something you can’t “see” they want all the details.

I’m not suggesting anyone with mental health issues need unsolicited advice. It’s the lack of understanding. It’s the stigma still attached to any mental disorder that leaves me, at least, resistant to talk about … I’m embarrassed and ashamed of it.

No matter how often of my psychologist tries over and over to get me to accept the fact that mental illness is as real & debilitating as a physical illness, I’m still a work in progress. I mean, I get it … Just wish I didn’t have it.

But I am so done with the judgements and criticisms, which by the way makes me feel worse about myself. I am at a point where I can honestly say, sorry … didn’t ask for your advice & I don’t want it, thanks anyway !