Mast Cell Activation Disorder
bad hair day( :-), well it is true, with a teen daughter not having the energy to "dress" or do hair is a major issue!)
Shall I go on? We could talk about sex life, marriage, dating, reproduction.. it just gets uglier.
It isn't pretty. It is one of the ugliest diseases. It takes everything. That list was just the shortest version of the "physical list" how about the emotional side?
I appreciate that getting awareness for an unknown disease is difficult. I have been frustrated like many that it seems no one knows what Mito is, and/or our Drs. and hospitals don't "believe" that Mito exists.
We all watch the Breast Cancer Association commercials and all the pretty pink pens,shoes and other pretties that we associate with the disease and their advocacy. Those warm and friendly ladies all looking so tidy,healthy(or at least feminine and affluent) and active while running or walking in their race to find a cure. Kind of a feeling of celebration, happy party kind of feel to it all.. I don't donate to breast cancer awareness because that is NOT the truth about breast cancer in my experience. Breast cancer can rob a woman of her identity, can kill her, the medications rob her of her hair,her energy and health.. it is torturous, far from " pretty and pink". The irony gets me upset every time. I know they are trying to sell the dream that once cured everyone will be happy and healthy, but I am not buying it. It stinks of marketing,packaging- just fake and fake to me equals lies. Surely I am not the only one who figures when folks look healthier and more affluent then I do, clearly they do not need my help? I treasure homemade gifts with all their imperfections, they reflect reality. When someone tries to sell me something so perfect? I am suspicious.
Mito isn't pretty. Having snapshots of cute, happy and healthy looking kids isn't what I see when I think about Mito. Seeing groups of mito patients hanging out and smiling isn't what I know about Mito. Seeing adorable kids with tubes hanging out of them with perfect hair and cute clothes, isn't what I see when I see Mito. IT is like some mysterious advertisement and marketing campaign, some sort of weird undefined social pressure being put on the families, that is trying to hide or suppress everyone who's mito journey is too ugly for the public to see.
Seeing those pictures and feeling that pressure to be a pretty advocate makes me feel there is no way Abby has Mito because we don't look anything like that. Mito(as we know it) is not pretty in our house. Mito is unmade beds. Mito is greasy,matted hair. Mito is comfy but ugly clothes. Mito is drawn tired sick looking faces. Mito is pain. Mito is upset stomachs. Mito is crying. Mito is anger. Mito is alienating. Mito is hidden. Is our version of Mito so shameful they need to make a "pretty" face to represent the ugliness? The higher rate of CPS involvement. The fact that most primary care Drs still do not believe in Mito,well at least our version of Mito(yours too?). The fact that hospital after hospital will not take a protocol letter seriously. It is ugly. Really really ugly and to hide that sends a message of shame to me.
Although I do firmly believe that for Abby her depletion is secondary, At some small level inside me I fear that it could be primary, but I feel like this disease has no room for us. We are too "ugly" to be represented, we don't fit. I am not alone in this feeling.
Why do so many Drs. not believe in Mito?
Why do I feel ashamed that it is on her record?
Why don't Drs take the Mito Specialists and their protocol's seriously?
Is it the fault of the tired,ugly patient? (NO!!!!!)
Frankly, those type of issues are way beyond my pay grade. I am not a Dr, so not my job to make my Dr. believe in Mito, or somehow force them to read literature, or force them to call a Mito Specialist when the Dr. disagrees with the very existence of the diagnosis and Speciality. Out of all the Drs. Abby has seen, I would need a very powerful magic wand to convince most of them. This is an issue for the Drs. to sort out. I don't have the medical education to do the argument one bit of good. Patients don't have the education(in most cases) to even begin to fathom the issues within the Medical Association. Yet, I feel we are being asked to bear the burden.
I get it, patients and their families make the best advocates, after all, we are the ones with the most to lose or gain. but why not on our terms?
When I watch the ASPCA commercials I WANT to give them money. Why? Because they show me the ugly side of animal abandonment and abuse, they show me what they are trying to fix. I want to give my money to help those poor,sick, ugly dogs that NEED me. Why would I donate if they showed me pictures of cute,fluffy puppies? I also want to know that when I donate money that the money goes to those dogs to be helped , not just used to generate funds to build new shelters(office space), or make new commercials.
IF we don't show the world the "ugly" side of Mito, if it all just seems pretty, those like me will save their dollars to give to a cause that needs them. Pretty means their help is not needed. I am a pretty simple kind of person. So maybe I am the only one who doesn't want to give money to people who have more then I? That appear healthier and happier then I?
Dealing with Mito is the ugliest thing most families will EVER have to deal with, why add the burden of expecting them to try to make it pretty too? To make them responsible to teach Drs? Media? The Public?
This disease is ugly. There is no hiding it. Perhaps we should let the world see it for what it is? Because quite frankly trying to put lipstick on the pig is getting us nowhere.
For my entire life I have been told repeatedly, "Just be Yourself". So let us let Mito be itself. Mito is what it is... it is ugly, traumatic, suffering,illness,fear, social stigma,hated, and sometimes deadly. It isn't pretty.
As a family, we have been through a lot. We have dealt with issues that were more life threatening. Why does it make me ashamed to say "My daughter has Mito?" When I think of everything else we have overcome I feel proud. When I think of Mito I feel the need to hide it.
Why feel shamed? We cannot hide the ugly. What good does it do to hide the truth?
If I attempt to teach my Dr about Mito, I know too much. If I don't teach my Dr. about Mito and be a "pretty advocate" for Mito, I am failing at Mito Advocacy. I cannot win.
Some patients think we should "hide" the cases where CPS is called on Mito Families because CPS is part of the ugly. They don't want the "public" to associate Mito with CPS. I disagree. Plus, it is too late, the proverbial cat is out of the bag. We, are the "public". We already know, why deny it? There is a higher incidence of CPS involvement with families who suffer from Mito, it is the truth, and it is UGLY too.
No more secrets.
If it were your family that CPS investigated just because you had a child with Mito? How would you feel when there were so many pretending that ugly did not exist..
Admit it, Mito is UGLY.