How does it feel to be told that you will likely live for the next 25 years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?
How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age? – That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?
The answer to all these questions is this… fine!
Because by the end of that speech, you’re in shock. You think to yourself…. Yes, yes, yes that is all very well and good for someone else, but none of that will happen to me (Even though at that exact moment it IS happening to you!!) That is the beauty of shock and denial – The first stage of having ITP
Shock & Denial, the 1st Stage of ITP
When I received my diagnosis, I never felt any denial. I told everyone about having ITP. I was happy to discuss it and I felt ok about the diagnosis. I thought ITP was actually quite interesting and told myself, ‘if you’re going to get anything, it may as well be something weird and different.’
In the beginning, I was the perfect patient. I did everything I was told. I stopped drinking, I set an alarm to take my medication, I went to bed early, I went to every appointment, I nodded and said yes to everything, I went where ever I was sent, and did what ever needed to be done. I was incredibly compliant. This was my denial.
I had admitted to myself that I was sick, yes but I secretly knew I could do something to make it stop. I told myself that if I was really, really good, I would be able to reverse it. I thought, I’m different to everyone else, it will be different for me. Denial.
Not for a very long time, perhaps years, did I realise that ITP was not going away. I still get a shock every now and again, thinking…. Gosh, is this still going on?
Guilt, the 2nd Stage of ITP
When my ITP did not go away, things started to change. This was when I started to feel guilty. The haematologists at my hospital had told me that everything about autoimmune disorders pointed to it being a life style disease. I started to tell myself that I had done something to trigger getting ITP. Had I caused this? I became convinced that I had given myself ITP.
It is strange how you can feel guilty towards yourself. I started to feel guilty towards my own body, like I had let myself down in some way – I just could not figure out how.
Feeling guilty is incredibly destructive because it can lead you to compare yourself to those around you. As you try to pin point what you had done to cause ITP, you start to think about your actions in comparison to others. Had I drunk too much while traveling around Mexico? If so, then how much did everyone else drink? Surely I was not the drunkest woman in Mexico City – Was I? Why didn’t everyone else get ITP too? Why didn’t something bad happen to that other person? If I am guilty – then why aren’t all of those people guilty too? It is a bad place for your mind to be.
Anger, the 3rd Stage of ITP
Comparing your life to another persons life is the easiest way to feel angry. Particularly if that person is a raging alcoholic + has perfect liver function + and has 0 autoimmune disorders = Anger. I have compared myself to smokers, drinkers, criminals, people who eat McDonald’s, people who drink coke and take drugs, and people who party hard and are stressed at work. It wasn’t pretty. I was angry.
Chances are you are misdirecting your anger in a number of stupid ways. You may feel angry at your doctor’s, thinking that they have let you down in some way, or for not helping you make a long term plan. You may feel anger towards your family and friends, those who are closest to you and who are trying to help the most. You may be angry at yourself for having such a frustrating body, or for making stupid choices when you where young – yes, I ate a lot of microwaved food too.
Dealing with anger can be very difficult, particularly if you don’t even know you’re angry. You need to realise how you feel and pin point the source of your anger. There is no good way to move through anger until you realise that that is how you feel. If you don’t know you are angry then you cannot start to remind yourself that feeling angry is a huge waste of time.
Bargaining, the 4th Stage of ITP
Bargaining is the hopeful stage. Mostly, it looks like late night googling of obscure cures for ITP. Bargaining is the process by which you think that you can exchange something for your health back. Bargaining might sound stupid to others, but it is important to remember that the process of bargaining, deciding what you would and would not give up in return for your health, is actually an incredibly positive process. Bargaining is a form of hope. It is not to be treated lightly or made fun of.
While bargaining can often be confused for denial, the difference is that bargaining offers the ITP patient a sense of agency and control. Bargaining is my favourite stage for just that reason – it offers hope.
I am very good at bargaining. I think that this is the stage that I have spent the most amount of time in. I often tell myself that I am just one simple step away from solving the whole ITP / Autoimmune mystery.
Perhaps you have bargained gluten one week and dairy the next? Yes, I have done this too. Perhaps you have decided that you’ll never drink….alcohol / coffee / caffeine ever again? Or you’ll meditate everyday and sacrifice your sleep in for a cure? You promise to practice new breathing techniques and buy lots of different kinds of tea?
You may or may not sound crazy at this point. Your friends and family probably can’t keep up with all the changes you are trying to make in your life.
Bargaining can be fun and hopeful, but it is rarely a sustainable mind frame (otherwise it would be the last stage not the fourth – Obviously!) Most people get over bargaining naturally, as they realise all their efforts are coming to nothing.
Depression & Loneliness, the 5th Stage of ITP
This depression can come on at any time, but for me it tends to arrive straight after bargining, when I realise all my efforts of resource trading have been a big waste of time. This is the moment when I don’t want to try anything new anymore, I want to whinge and be a pain in the arse and wallow and feel sorry for myself.
This is the point when you feel like everyone is different to you. This is the moment when it seems like no one understands. Your friends and family are probably still catching up to weather or not you are eating gluten anymore.
It feels like everyone around you is sick of hearing about your illness and that life has moved on while you’re still dealing with it – Everyday. This is the moment when you really need to get online and read funny articles like this one. 10 Things you Should Never say to Someone with ITP. This feeling should not last too long, but if it does, think about seeking medical advice to process how you’re feeling. Talking to professionals does actually help.
Reflection, the 6th Stage of ITP
This is the one that I am in right now (Refer to current article as evidence). Reflection gets me thinking and looking for others to talk to. During this time I want to compare notes with other ITP people, ask questions and figure out what is really going on. My initial reflection stage lead me to start this blog in 2012.
I am always thinking about how I have been changed by ITP and how my perception of the disorder has grown and developed over the years. In the beginning I took ITP very seriously. Now I am a lot more relaxed and at ease with it all.
I feel like I am starting to refocus my energy towards ITP at the moment, and am enjoying meeting more and more ITP patients online. It’s these stories that always cause a moment of reflection on my own journey. Often I am thankful that I have learnt so much and feel more in control now than I ever have.
Acceptance, the 7th and Final Stage of ITP
I have a strange relationship with this stage of ITP – I have felt acceptance a few times over the years but it has not lasted long. When I find myself accepting ITP into my life, I start to worry about what that means. I get nervous that by accepting ITP, I am quitting or giving up.
If I accept this, am saying that this is good enough for me? I worry a lot about acceptance, because I don’t want to be happy living like this, I want things to be better. If I accept this, will I stop looking for a cure, I will stop wanting a cure? I am not there yet.
This is the moment when I am often flung right back to the start and I begin the journey all over again. I think I have been through all of these stages three or four times over. They are different every time I move through them, but each stage never lasts.
How has your experience of the ITP journey been for you? Have you been through anything like what I have? Or has your journey been completely different? Please share in the comments below.