I Have ITP- but it doesn’t Have Me.
By Dave Farrow
I developed ITP and neutropenia (loss of some white cells) way back in 1993.
Over the years I’ve had most treatments available including a splenectomy which did not work. Twenty-seven years later I still have the two conditions lurking in the background somewhere but thanks to treatment with various doses of Mycophenolate and a caring Haematologist that I can talk to, my counts have remained stable for several years now.
However, I have had to help myself too. In the early days I was stressed out and often looking for new bruises that were not always there. The large doses of prescribed steroids were driving me crazy and my loss of white cells made me vulnerable to infections. I knew that I had to somehow take charge and develop some coping strategies. I thought It time I shared some of these with others.
I was not feeling well and had been in and out of hospital during my first year, but I thought it important to learn all I could about the Immune system and the enemy within that was sometimes attacking my platelets. The immune system is complicated, so I tried to keep to the basics at first. I sought Information from books and explanations from health professionals. I never really met another person who had ITP in those days. The ITP support organisation didn’t exist in 1993. I was one of its early members. Later it became a great source of information and of course much more is known about ITP nowadays.
At first, I was stressed out by it all but after a while I thought it best to become a patient, patient! As all patients know we spend a lot of time waiting to see Doctors and others. I go prepared with something good to read. I get to know staff and other patients. I became patient about results too. I learned not to expect rapid, long lasting, positive results from treatments.
I have practiced yoga, relaxation and a little mindful meditation over the years. I think controlled gentle breathing helps me relax and forget about ITP. Maybe my immune system somehow becomes aware of the calmness and as a result refrains from killing my healthy platelets for a while. The causes of stress and depression are often within us. They consist of negative thoughts about situations, events and illnesses, etc. Such thoughts as ‘I will never get better.’ ‘These new tablets will never work.’ ‘I can’t live as I want to because of my ITP.’ ‘It will kill me in the end.’ Such thoughts trigger mood changes. I try to challenge such thoughts and either reject them entirely or modify them in some way. Then maybe replace them with a positive thought such as ‘I will get better - at least enough to live and enjoy life as best I can.’ It is good to notice how that thought feels.
So, I am using a cognitive behavioural approach to coping with my ITP. Now I can say, ‘Yes I have ITP, but it doesn’t have me’. I invite others to give it a try if they haven’t already. Learn all you can. Become a partner in your care rather than a passive receiver.
And watch out for those negative thoughts.
There is lots of help out there. There are CBT counsellors and masses of books on the subject. I recommend ‘The complete CBT guide for Depression and Low Mood.’ Leon Brosan and David Westbrook.
Dave Farrow trained and worked as a mental health nurse, teacher and counsellor. He is an ITP friend/mentor