The Invisible Illness of Myeloproliferative Neoplasm
What does it feel like to be 18 and diagnosed with myeloproliferative neoplasm? Emily shares some of the frustrations we can all relate to.
I have an MPN which is also known as myeloproliferative neoplasm. If we break down the words they give a pretty good working definition.
Myeloproliferative Neoplasm:
Myelo – From the Greek Muelos which means marrow
Proliferative/Proliferation – to grow or multiply by rapidly producing new tissue
Neoplasm – an abnormal growth of body tissue
So basically, the bone marrow produces lots and lots of cells that do not belong there. That is my basic working definition of a myeloproliferative neoplasm.
MPNs are invisible illnesses. There really are not many outward signs that show that those of us who live with it are sick. But boy, do we feel it! I don’t know about the rest of you, but no matter how I look, sometimes I feel like I’ve been run over by a truck.
However well-intended the phrase may be, saying “but you don’t LOOK sick. . . ” to a sick person, it is pretty insulting. The implication being that we are faking it or that it’s not real.
We don’t look sick? Well, what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some, but not all sick people look alike. Shocking, I’m sure. (insert eye roll here).
We all have good days and bad, but for the invisibly ill, including those with myeloproliferative neoplasm, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t do this, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, battered, and miserable.
I learned to put on the happy face real quick when I got my first “Grown-Up Job.” I started at my office as the receptionist, so putting on the perky, bubbly personality–however fake it may have been– became a part of my daily life. Fatigued, sick, or suffering with a headache? It didn’t matter, that smile was plastered on.
Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick, you would not know. There are days now, though, when I just can’t fake it anymore. My fatigue catches up with me and knocks me out.
On those days, I tend to hear that dreaded “but you don’t LOOK sick…” Also, on those days my sarcastic side will often think (or sometimes say, depending on the audience) “And you don’t LOOK like a jerk, but I guess appearances can be deceiving, can’t they?”
Believe me, I am neither wanting nor expecting sympathy. Understanding would be wonderful though. Yes, it’s true that we don’t fit the picture in most people’s heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not.
Please, think twice before telling us we don’t fit your image.
Lina is a 25-year-old Essential Thrombocytosis patient. She was diagnosed when she was 18 years old. You can visit her web site here: http://linampn.wordpress.com
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Some of these illnesses that are rare you may have not heard of… Which is kind of the idea. We want to give those who have some rare diseases that are invisible to share their stories too. but be sure to read through it. They are not specifically all about the illness, but more about the emotions of living with #invisibleillness. I hope you “enjoy”
Check out my article for #iiwk12 Just a little part of what it’s like to have an invisible illness. http://t.co/t68vB9Ng @ihadcancer @MPN_RF
It’s #invisibleillness week. #myeloproliferative neoplasms blogger @linampn is sharing her story. What’s yours? http://t.co/xGCN0WP2
After I was finally diagnosed, which in itself was a great relief to me, the only person that truly understood was my husband. Even my mom, bless her heart, asked me,”can’t you just take a vitamin?” sigh
I stopped telling people about having an MPN because I am sick of getting the look, either of sympathy or incredulity. If someone that already knows that I am sick and actually shows enough interest to ASK me about it, I’ll discuss it with them, but that almost never happens. There are those in my own family that actually think I am making the whole thing up. I most assuredly am not faking anything about being sick, bit this article is right abut the “brave” face we put on for other people. I think the hardest part (other than dealing with inept Doctors) is pushing on with “life as usual” on the outside when inside you feel as if you’d rather curl up in a ball and cry.
Thank you so much for sharing this blog post. I take an 11 year old daughter who was diagnosed with this same MPN at the age of 9. She has good days and bad but so many parents as well as teachers look at her and think she is being lazy on her bad days cause she doesn’t look sick.
it is difficult as an adult to understand and deal with MPN, bless your young daughter. I just can’t stand the “you don’t look sick” ALL the Doctor’s must be wrong..
Hang in there, and try to inform those in your daughters life. Maybe knowledge will help with compassion.
Hi my husband was diagnosed with primary Myelofibrosis and he did look a little pale but never looked ‘ill’ whatever that looks like and so because we told people he had a type of bone marrow cancer they kept saying he looks so well…..like telling someone they look well makes them feel better…. it’s Hi, How are you? you look great…. move on and don’t wait for an answer…. now he has had a stem cell transplant from an unrelated donor and here we go again….. you looks great…you look so well… not how do you actually feel…..I think people don’t believe what it’s like… when you try to tell them because they keep thinking you look great it can’t be that bad Oh well those of you who know from experience what these diseases are like to have and those of us who are your care givers know too and support each other….God Bless you.
I normally laugh and tell them the I will share their diagnoses with my “team” of Doctors, and that should make it all better..
It is most difficult for me as even my husband makes no effort to support me or learn about the disease. Nothing like going through BMB and results appointments alone…
I have been sharing on my facebook page. Have found this to be one of the best ways to learn and express.. Thanks
hugs to you both :-)
I don’t even know where to start, I have not been confirmed as having anything yet but my grandma died of this horrible disease and at a young age, I’m 34, I am exuting a lot, a lot of signs and abnormal blood test’s…. I have an appointment with an internal med dr coming up in a few weeks but the waiting And not knowing is killing me… I feel , like she said, like I got hit by a truck most days…. Aches and pains and for all the things that they have thought were wrong with me, there is always nothing, nothin at all wrong with me :( its very frustrating… I know something is going on with my body an I would like to find information on what people actually feel like or go thru before the even know… This is the first information of that sort that I have been able to find and anything else you could discuss with me would be GREATLY appreciated…. I’m worried and scarred since my mom watched my grandma go thru it but if there is nothin wrong with me it may be more frustrating for me than finding out I have something, I hope that doesn’t sound stupid. I’m am jus miserable and tired all the time, I don’t have the anemia yet, it’s mostly high counts instead of low but I literally feel like I have been hit by a truck…. I hope this make sense I’m jus frustrated and scared, I have 3 children who need me and am striving for info from real people not jus clinical stuff that is hard to understand and basically the same thing over and over again… Please help if you can and good luck in your journey… Thank you Jen
Jennifer, I totally understand where you are coming from. I was diagnosed ET JAK 2 pos on September 24, 2009, my 5th wedding anniversary. Not exactly the present I was looking for but… at least I had an answer, no more like a starting point, on what was going on. Most days I too feel pretty run down, aches, pains, migraines with aura. Right now I am on 81 mg aspirin therapy only and have a CBC to check on my levels. Each Dr is different about when to start treatment. Mine wants to wait til my platelets hit the million mark. As long as I can deal with it, I am ok with that. Of course i don’t have any little ones to take care of. Back in January of 2008, I just didn’t feel right, you know yourself and things were just so off, but I kept pressing on. By August of that year, I just couldn’t take it anymore and made a dr appt. my platelets at that time showed 695,000 but the GP wasn’t concerned. I was but hey who am I right? But I try again a year later because I’m not getting better and i have had enough of feeling lousy. I make another dr appointment and get a referral to a hem/onc who does a bone marrow biopsy and lo and behold there’s my diagnosis. So I hope this helps some, I know it’s scary. I don’t know of anybody in my family that had this so I look for the comaraderie of fellow patients and there experiences as well.
Thank you for your response… So can I ask you how you felt, what hurt, what kind of things you’ve dealt with ? Should I push for a bone marrow biopsy ? I’m really worried, my mom had to deal with my grandma and this disease and I don’t want her or my kids Or husband to have to go thru that… I jus want to know… I hope you are well
I felt and feel extreme fatigue, my feet are very painful to walk on and with that I have the pins and needles effect continuously from the knees down. my aches come from the long bones in my arms and legs as well, sorta dull at times and very sharp at others. Oh and I get some wicked charley horse cramps in my hands, feet. migraines come with the auras. As far as a bone marrow biopsy, I had one in the beginning so it would be a baseline way to gauge how far the disease has gone in the future. It’s also how they determined my JAK2. All you can do is gather as much info as you can about this, talk to your doctor, get your husband involved in this process as well. There are communities out their on the web that you can join and ask questions of people who have our diseases and have had them for years. they are very knowledgable. Mayo Clinic websites are good info to. here’s my email if you want to know some sites to go to. roodawgs98@yahoo.com I know it’s scary but you can do this. <3
Thank you so much <3 tryin hard to be positive !!