10 Things you should never say to someone with ITP

ITP, low platelet count, low Platelets, ITP disease, immune system disease, itp blood, immune thrombocytopenia, itp, Prednisone, autoimmune disorder

(Warning:  Contains Frustrated Ranting & Bad Language)

A few days ago I read a great post from Pins & Procrastinations called 10 Things You Should Say to Someone with a Chronic Illness.  While it was about chronic illness, I couldn’t help thinking that everything Susie wrote applied to everyone with an autoimmune disorder.  Her first comment is particularly important.  Autoimmune disorders are mostly invisible.  Sufferers are hard to spot initially.  We look like normal people.

While autoimmune disorders all manifest from an abnormal immune response towards substances and tissue present in the body, the results are a lot of quite varied illnesses.  Lots of AI disorders are treated with immune suppressants with a combination with other drugs yet they are SO DIFFERENT!  There are over 180 distinctly different AI disorders – Here – and I am embarrassed to say I have only heard of 19 of them.

I realised how little I know about other AI disorders.  I was fascinated by a blog post on Dealing and Healing about the 5 House Rules specific to crohn’s disease.  Amber has inspired me to share my top ten things you should never say (or stop saying) to someone with ITP.

Things You Should Never Say to Someone With ITP

1. ITP..?  Hmm, I think my cat had that.

You think I am kidding.  It was a few years ago now, but I will never forget sitting in a cafe in Sydney trying to explain to someone that in fact her cat did not have ITP … AND…on the very slim chance that I was wrong and her cat did have ITP, I didn’t give a rats arse!

People tend to try and understand what I am going through by drawing on any experience they think might be relevant.  I don’t think this is a bad thing.  I think it’s a sign of someone trying to understand and relate to me.  I think people should continue to try and find common ground to better understand each other – Unless your only assumed experience with someone’s autoimmune disorder has anything to do with your cat.  In that case shut up… Just shut up now.

2. Just hold your finger above your head till it stops bleeding.  

In a crisis, I have found, that everyone likes to administer their own form of savage first aid.  The biggest problem with getting involved with the first aid of a minor ITP injury is that it only ever ends two ways.

Either you get freaked out by how much I am bleeding OR you get bored by how long it takes for me to stop bleeding.  Either way, I am still bleeding, but now I feel self conscious and freakish.  If you are going to get involved in the first aid of a minor ITP injury then be prepared to stick it out till the end, otherwise leave us alone to sort our own cut fingertips.

3. You need to be positive.  It’s all about your state of mind.  

The problem with people telling me to think positively, is that I actually believe it helps.  I do believe that you need to remain positive.  I believe that your mind has an immense influence over your body.  I grew up watching Oprah.  I get it.  I am just so freak’n sick of hearing it from people who aren’t doing it themselves. You are only allowed to offer advice on someones state of mind, when your have your own under control.

Positive thinking is great but it is normally the advice you get from someone who has absolutely no idea what you are going through.  People who have had a chronic illness are easy to spot because they are the first people to say ‘God That’s Fucked! Shit Aye!’

4. You look really stressed / tired / anxious / worried / sad / wrung out / scared.

Yes.  I know.  I am very aware.  ITP is a stressful disorder.  Most medications that help ease the destruction of our platelets are also mood altering and anxiety enhancing mind-benders.  The way that western medicine treats AI ( I am not condoning or scolding the method) is to suppress the entire immune system. Immune suppressants effect our sleep cycles, ability to relax, oxytocin release, blood pressure, heart rate and the flight-or-fight response in our brains.   Being on immune suppressants means out bodies are in a chemically induced state of stress.

During fight or flight, the adrenal gland releases cortisol, a corticosteroid hormone.  Your body shuts down processes such as digestion and increases your heart rate.  In situations in which your body perceives the stress as a severe threat or the stress is prolonged, an excess level of cortisol becomes active in your brain.  This is your biological response to stress. (1)

5. Are you sure you don’t just have anaemia?

Firstly, Umm… anemia is pretty bad too!

Secondly, no.

I have never laughed harder than when someone told me that they were sure I was just really low in iron.  That was the moment I remembered that everyone secretly thinks they are a doctor.

My Haematologist is one of the best in the world and has specialised in platelet and blood disorders for more than your actual life.

6. You need more exercise.  

I probably do.  But also need to respect and understand my own body.  As do you.  Exercise involves the tearing apart and regeneration of muscle tissue.  That is how muscles are developed.

There is a huge importance put on platelets to stop ITP patients from bleeding to death when they cut themselves.  Lots of people seem to forget that platelets are also involved our bodies repair mechanisms. Our bodies are getting broken and bruises and wearing through all the time.  Blood vessels actually burst all the time, veins get holes in them and capillaries pop.  Our bodies are struggling to keep up with general maintenance.  Exercise is a wonderful luxury that I enjoy as often as I can.

6 (b). You need less exercise. 

See above.

7. You should be doing Bikram Yoga.  It is the Cure!

Ahhh yes, the holy path of the yogi…!  Yes, I am sure that Bikram Yoga is a magical spiritual path to eternal bliss.  It’s history dates right back to the 70’s!  The great Master Bikram Choudhury accused of rape, sexual battery, false imprisonment, discrimination, harassment, and other counts in addition to the rape allegation.

But as far as I am aware people in India still die.  And I am pretty sure lots of them have autoimmune diseases.  (never mind the fact that Bikram yoga is from America)  And some are still sad.  Yogis from India and America are not an immortal race of god like creatures that dominate the world with love and have cured all autoimmune diseases.  They are just normal like us.  Only, they do Bikram.

Actually I love yoga.  Yoga is great; but so is walking, dance class, going to ballet, stretching, reading on the floor, having sex, having a bath, doing pilates, burning the dance floor at the pub, mediating, singing really loudly, skipping, surfing and swimming in the ocean.

8. Wow, those drugs are really bad for you, you should get off them!

No Comment.

9. Are you sure you should be drinking? 

This one is a favourite of mine.  I love it.  It is always remarked by a stranger, holding an alcoholic beverage, telling me that I shouldn’t be drinking.  Well, should anyone really ‘be drinking?’

Alcohol retards platelet function.  Fact.  But here is the twist, the few platelets that I have tend to work really well.  Our platelets are young and seem to rise to the challenge, rallying themselves to our aid.  Your platelets remain retarded after drinking.  Ha ha!

What they really should be saying to me is – ‘Meg, are you sure you should be drinking THAT MUCH?’  The answer is ‘No, no I shouldn’t.’

 10. Everything happens for a reason.  

If everything happens for a reason, then there is a reason why I have ITP and you don’t.  What reason could that be?  If everything happens for a reason, then there is a reason why some people’s babies die when others don’t.

This is not a conversation you never want to have with me.  If everything happens for a reason, the everything that doesn’t happen has a reason too right?  If feels too biblical and down right awful to think that autoimmune disorders are actually deliberately handed out with intent.

Just to be clear...

These are not comments I ever get from my loving friends and family.  My friends and family are so good to me.  The above comments normally come from people who know nothing about me.  They come frequently and they come often, and they have started to make me stop telling people anything about having ITP.

Thanks to all the lovers who keep telling me that ITP is Fucked… 

(1)  Endocrinology of Stress.  L. Michael Romero and Luke K. Butler Tufts University USA – Published in the International Journal of Comparative Psychology 2007

 

 

 

 

 

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

9 thoughts on “10 Things you should never say to someone with ITP

  1. 79rodrigueze@gmail.com'
    Erica says:

    Lmao I love how you explained it all! I alzo have itp and I’ve had it for over 5 years. And tip itp freaken sucks!

  2. paul@paulirvine.com'
    Paul says:

    nice. I really enjoyed reading this, and a heartfelt “yes its really fucked up” to you Meg. IT applies to other situations too. I totally get that everyone thinks they are a doctor. I’m an “a-grade” fixer!! and if a friend tells me about their problem you can guarantee I’m going to break google to find an answer. that’s just a human condition to want to help.
    BUT… I am not of the opinion that doctors, however well practiced and specialized always know best. I do believe you have a good hematologist. I hope so. But I also believe that like many professionals, they also are just like me. Sometimes they really dont know and are making decisions that may be flawed. My own case… my doc said I had a family history of heart problems, and I had high cholesterol. Now that is nothing compared to the shit-fucked-uppedness of ITP!! 🙂 anyway, he was about to prescribe statins. For life basically. I stopped and asked is there any other way? he slowly replied that some people think that diet can improve things ( I had a relatively healthy diet already ) . So i asked how about I try that first and come back in a few months?
    On my return, my cholesterol was down from over 200 to under 130, well under the 150 he’d set as my max. just 8 weeks later.
    He looked at my results and proudly proclaimed, so the drugs are working then? uh-uh… no drugs… all diet. My doc was quiet. then asked what I did. I told him… he then said thanks, and revealed that he himself was on statins. he didnt really think diet could have such a remarkable effect. My diet today keeps me that way, and I now consider it a normal diet.
    In case you are wondering about my interest in ITP, a dear friend has it, and I’ve been trying to understand. Your column was one of the best to help me understand from her perspective, not my own. Thank you.

    • andrea13jones@gmail.com'
      andrea says:

      Shenaaz, I understand what u r going thru. I have been ITP free for 10 years now. I had ITP for 2 years. My platelets were next to nonexistent, usually staying around 5 or less. I tried several things, but nothing helped. Finally, I had my spleen removed. Since then my platelets have been normal. I know speanectomy doesn’t work for everyone, and that I am extremely lucky. I wish u, and all those who suffer with ITP the best of luck and happiness.

  3. Pingback: The Beginners Guide to ITP; What to Do After You Are Diagnosed

  4. Jessbauchler@gmail.com'
    Jess says:

    I have suffered from chronic Itp since the age of 4 and I’ve never knew there where so many other people! I’ve been dealing with it for 20 years! And still no hope of it going away! I have had two children- one at the mere age of 16 which was great as my body bounced back super quickly but with my second 2 years ago I wasnt so lucky, after having to have a c-section a lost 2.1 litres of blood- we only carry around 3.5 litres so I’m still slowly recovering! 🙂 so awesome to see some awarness about ITP as it is such a daunting illness!

  5. sdiamondl@aol.com'
    cindy says:

    ITP IS FUCKED UP! I am so pissed off that I am on my 4th round of tanked platelets since 5/9/17. Today I was at a whopping 2,000 platelets and it is scary that a brain bleed could happen. They gave me 8mg/kg nplate today and 25mg of dexamethazone for 4 days. No IVIG No platelets this time with my new libral dr. However, every 2 weeks my platelets tank except for the one time I had triple antibiotics. After triple abx my platelets lasted at a safe level for 7 weeks.
    I just am livid that the drs don’t look at underlying causes. Instead they stand tall next to the word “ideopathic” meaning unknown etiology and they seem like idiot drs to me for not trying to figure something out other then you just have ITP and lets give you bandaid after bandaid. So Mayo here I come late August and I have an appt with a rheumatologist in Oct in Colorado. I pray he’ll get me in sooner. That is my rant. Be well all! Cindy

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