I have an online friend who just recently found out she has Cushing's and is trying to learn about this disease and all it entails, all while quite ill. Interestingly enough, she and I both had similar experiences today. Okay, the method wasn't too similar, but the meaning was pretty close and hit us both rather abrasively. You see, today we were both told that we shouldn't talk about our illness to people we would expect to be caring and supportive.
Some of this stems from ignorance, and I can't blame them too much for that because even doctors are ignorant of this disease, but knowing that still does little to lessen the sting. So, let me explain a few things to those who want to get past the ignorance and move more towards support and understanding:
This disease takes just about everything you've got and then some. Literally. It affects EVERY aspect of your physical body, every system and function, it drains all energy even for simple things, directly affects your emotions, your ability to think and concentrate -everything. If something affected your life that dramatically, and that universally, it WOULD be a part of every aspect of your life as well. Talking about it would be talking about your life, and vise versa. And talking about it is not a measure of your optimism or pessimism, it just *IS.*
Not talking about it does not make it go away, either. In fact, it generally makes things worse for us. Even when someone knows we are ill, they rarely understand how much this disease does effect unless they've somehow experienced it for themselves (as the one ill or a support person). (Think of the worst flu you've ever had, plus bipolar disorder, plus an extra person in weight, plus being 75 years old, plus insomnia, etc...I could keep going but you should get the picture!) Expectations of what you are capable of and what diagnosis, treatment, and recovery should look like are completely different with this disease than surgery and recovery for more common ailments. It is not fast. It is not easy. Even a good outcome can mean lifelong difficulty, and certainly 1-2 years plus of recovery.
To people around me, I may sound like I am pessimistic about my brain surgery because I explain the risk of recurrence and the long recovery time up front. I know I will receive a cure, even if I don't know in what form or timeframe it will come. I talk about the "negatives" because of people who have these false ideas, because I don't want them ignorant. Again, it isn't negative, it just *IS.* I know what to expect and I know that if everything goes perfectly, it will be long and hard. And still, I am THRILLED for the chance of surgery, and the remission that may bring. When those long, hard days of recovery roll in, I do not need uninformed people coming up to me on a difficult day and making judgmental or flippant comments. I don't need to again be blamed for the fact that I haven't recovered yet, some 3 or 8 months after surgery, to have their support withdrawn because I must be faking, or to have them tell me that my daily struggle is inappropriate to discuss with friends and loved ones. In fact, the stress such comments/actions would bring me can be life-threatening in the days and weeks following my surgery.
When you think about it, we don't expect someone who has just found out they have cancer to NOT think/talk/read/research about it, or someone who has just had a child with down syndrome or autism. It is consuming! It is new, and it is big, real and in your face. Even with something positive like pregnancy or childbirth, we women talk about it all the time for a long time, and every time the subject comes up, we talk about it more! The difference is that Cushing's only gets worse as time goes on and steals more of the old self we once had. It is truly like mourning the death of your old self, learning what this new self is and what it requires of us, all while trying to fight for a diagnosis and treatment so we can get to the next self, the post-op, recovering self.
Right now Cushing's IS all but ruling my life. I don't make any excuses for that --it does take over; that is what it does. I also HAVE been fighting back as best I can and have been for a long time. Now that I've got the upper hand, I plan to win! But, for now, this is a big part of my life. If you wish to share a part in my life, you will, sad as it may seem to you, also have to share a part in my Cushing's. If you want to know about my day, you will undoubtedly hear about Cushing's in some way. If you want to understand why I do what I do, you'll have to understand something about Cushing's. If you want to be able to support me, you'll have to know something about what I am going through. It isn't an ultimatum, it is just the way it works.
I can't tell you how many acquaintances and old friends have told me they've looked up my disease, researched it, and asked questions or offered words of support showing that they spent a few moments to learn about what is happening in my life. It is SO touching that they would spend that time, that they would show that love and concern. One friend followed my progress and realized she had the same issues, went to her doctor, and now is well on her way to her diagnosis (She has the lab work proving disease, just has to locate the source now). Who would have thought? I don't take credit for her diagnosis; she did the work all on her own...but I AM so glad that she will get the help she needs now.
Maybe through reading about my illness, there'll be a little spark planted in your mind, so that the when you see an obese person you stop and think that their body may have done this to them and have compassion on them. Or maybe you'll have a friend who shares some odd symptoms one day, and you'll remember a tidbit you learned, and that'll be enough of a nudge to help them find the information and treatment they need.
Life isn't as black and white as it seems. We are all connected more than we'd like to admit sometimes. And, the world can always use a little more compassion.
Thank you for this, well said!
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